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Breast Cancer  Awareness Month

Dr. Renée Arlow, Conemaugh Memorial Medical Center

The new faces of care in the area Story, Page 3

Dr. Dan Clark, Indiana Regional Medical Center

Dr. Trudi Brown, Joyce Murtha Breast Care Center at Chan Soon-Shiong Medical Center at Windber


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WHAT’S INSIDE BREAST CANCER FACT SHEET CELL-EBRATION ‘Very important milestone’ for Windber facility, as journal publishes its research. Page 6

39%

SEEKING A CURE

IMPROVEMENTS IN EARLY DETECTION AND TREATMENT LED TO A 39 PERCENT DECLINE IN BREAST CANCER DEATHS IN THE U.S. BETWEEN 1989-2015.

Scientists studying cancer at molecular level with backing of federal agencies. Page 7

A PICTURE’S WORTH ... Detection of a lump often means more imaging, biopsy. Page 9

WOMEN IN THE U.S. HAVE A 1 IN 8 RISK OF BEING DIAGNOSED WITH BREAST CANCER.

U.S. BREAST CANCER DEATHS PER 100,000 WOMEN BY RACE 2009-2013

TEST IS BEST Annual mammograms are still very important, experts in region say. Page 10

HOW WE COMPARE

A PERSONAL CHOICE

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130

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Surgical decisions mean doctors serve as educators, counselors. Page 17

SNAPSHOTS OF CARE A look at facilities in Cambria, Somerset, Indiana and Blair counties. Pages 22-23

RISK FACTORS BEING FEMALE

BODY WEIGHT

AGE

ALCOHOL CONSUMPTION

LIKE A MILLION BUCKS Sources: Susan G. Komen, Healthline Infographic by Eric Knopsnyder/The Tribune-Democrat

Women dress to the nines, raise funds via Taunia Oechslin Girls Night Out event. Page 25


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RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT

Dr. Trudi Brown came on board at Joyce Murtha Breast Care Center at Chan Soon-Shiong Medical Center at Windber on Sept. 24. A native of West Virginia, she has been in private practice since 1995, focusing primarily on breast cancer treatment for the past 10 years.

Finding rewards in patient care New breast surgeons come on board at three local hospitals patient care.” Arlow and her husband moved to Richland Township. Brown comes to Windber after building her breast surgery experience in the Cleveland/Akron area of Ohio. She joins Dr. Deborah Sims, who plans to partially retire. “Dr. Sims came to us and said she was looking at ramping down,” breast center Director Erin Goins said. “We thought we’d better start looking, because it’s difficult sometimes to recruit physicians here. We found Dr. Brown, who graciously accepted the position.”

BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

Three breast surgeons who joined area hospitals in the past year bring a blend of experience and education. Dr. Renée Arlow started at Conemaugh Memorial Medical Center in Johnstown on Sept. 24 – the same day Dr. Trudi Brown came on board at Joyce Murtha Breast Care Center at Chan Soon-Shiong Medical Center at Windber. Dr. Dan Clark joined Indiana Regional Medical Center a few months earlier. All three say they came to the region to specialize in caring for breast cancer patients.

‘Develop a relationship’

“I love taking care of patients with breast cancer. I love the fact that I develop a relationship with them and their families.”

SUBMITTED PHOTO

Dr. Dan Clark, at left, joined Indiana Regional Medical Center earlier this year after spending the past 25 years focusing on breast surgery as part of his practice in Latrobe. The husband of a breast cancer survivor, Clark said that it was important to him that Indiana become a nationally certified breast center. Dr. Renée Arlow, above, started at Conemaugh Memorial Medical Center in Johnstown on Sept. 24 after she completed a breast oncology fellowship at the University of Pennsylvania.

DR. TRUDI BROWN, JOYCE MURTHA BREAST CARE CENTER AT CHAN SOON-SHIONG MEDICAL CENTER AT WINDBER

Formerly associated with Excela Latrobe Hospital, Clark first came to Indiana in his role as a national proctor for robotic surgery. “I fell in love with the facility that they have,” Clark said at the Indiana hospital. “They want to become a referral center for the region.” Indiana leaders asked him to join the hospital physicians group and lead the robotic surgery program. He agreed, but with an important condition. “We had to commit to developing a nationally certified breast center,” he said. “My wife is a breast cancer survivor. Robotics are fine, but it’s closer to my heart with breast cancer.”

‘Rigorous process’ Clark said breast surgery represented 50 percent of his Latrobe practice, and was a major focus for 25 years. Hospital leaders agreed to expand breast cancer programs. So while Clark spearheads the robotic surgery initiative, Indiana has put steps in

“I work very closely with the oncologists and the radiologists.”

RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT

place to become the region’s first center certified under the American College of Surgeons’ National Accreditation Program for Breast Centers. “It’s quite a rigorous process, but most of the components are in place,” Clark said. “They are not organized under one umbrella.” One piece that is missing is a dedicated magnetic resonance imaging system for breasts. Arlow is the region’s only surgeon who completed fellowship training in breast surgery. There is no board certification in the sub-specialty, so most breast surgeons have built up their experience by focusing their general surgery practice

of teamwork and collaboration with other specialists. She is looking forward to using her training as part of Conemaugh’s team. “I work very closely with the oncologists and the radiologists,” Arlow said at Conemaugh East Hills outpatient center, 1450 Scalp Ave. “That’s one of the advantages of a fellowship. I worked in all those different modalities and spent time with those specialists, learning how they do things. “There is really a whole pro‘Best patient care’ cess. There’s a lot of back and forth between the surgeon and Arlow said the fellowship the oncologists. I really think experience taught her the value that is how you get the best on breast care. A graduate of Franklin & Marshall in Lancaster, Arlow completed her medical degree at the Robert Wood Johnson Medical School at Rutgers University in New Brunswick, New Jersey. After a residency in general surgery, she completed a breast oncology fellowship at the University of Pennsylvania last year. The fellowship included participating in the treatment of hundreds of breast cancers of various origin and stages using advanced surgical techniques.

DR. RENÉE ARLOW, CONEMAUGH MEMORIAL MEDICAL CENTER

A native of West Virginia, Brown earned her medical degree at West Virginia University and completed her general surgery residency at the former Fairview Community Hospital in Cleveland, now Cleveland Clinic – Fairview Hospital. She has been in private practice since 1995, focusing primarily on breast cancer treatment for the past 10 years. “I love taking care of patients with breast cancer,” Brown said. “I love the fact that I develop a relationship with them and their families.” Brown said she performed more than 100 breast procedures last year and was looking for a chance to specialize in breast surgery. “Coming here was a wonderful opportunity,” Brown said at the Murtha center. “It is going to allow me to continue on with my passion. It is going to facilitate my dream to be a breast surgeon.” Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.


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Definitions

of the disease Glossary of breast cancer terms BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

Axillary Nodes – The lymph nodes under the arm. Benign – Not cancerous. Bilateral – Affecting or about both the right and left sides of body. For example, a bilateral mastectomy is removal of both breasts. Biobank (Tissue Repository) – A large collection of tissue samples and medical data that is used for research studies. Bioinformatics –The field of endeavor that relates to the collection, organization and analysis of large amounts of biological data using networks of computers and databases. Biopsy – Removal of tissue to be looked at under a microscope. BRCA1/BRCA2 Genes (BReast CAncer genes) – Genes that help limit cell growth. A mutation in one of these genes increases a person’s risk of breast, ovarian and certain other cancers. Breast Cancer – An uncontrolled growth of abnormal breast cells. Breast Density – A measure used to describe the relative amounts of fat and tissue in the breasts as seen on a mammogram. Calcifications – Deposits of calcium in the breast that appear as bright, white spots on a mammogram. Cell – The basic unit of any living organism. Chemotherapy – A drug or combination of drugs that kills cancer cells in various ways. Clinical Breast Examination – A physical exam done by a health care provider to check the look and feel of the breasts and underarm for any changes or abnormalities, such as lumps. Clinical Trials – Research studies that test the benefits of possible new ways to detect, diagnose, treat or prevent disease. People volunteer to take part in these studies. Core Needle Biopsy – A needle biopsy that uses a hollow needle to remove samples of tissue from an abnormal area in the breast. CT Scan (Computerized Tomography Scan) – A series of pictures created by a comput-

er linked to an X-ray machine. The scan gives detailed internal images of the body. Cyst – A fluid-filled sac. Data Mining – The ability to query very large databases in order to satisfy a hypothesis (“top-down” data mining); or to interrogate a database in order to generate new hypotheses based on rigorous statistical correlations (“bottom-up” data mining). Diagnosis – Identification of a disease from its signs and symptoms. DNA (deoxyribonucleic acid) – The information contained in a gene. DNA Sequencing – The technique in which the specific sequence of bases forming a particular DNA region is deciphered. Expression (gene or protein) – A measure of the presence, amount, and time-course of one or more gene products in a particular cell or tissue. Expression studies are typically performed at the RNA (mRNA) or protein level in order to determine the number, type and level of genes that may be up-regulated or down-regulated during a cellular process, in response to an external stimulus, or in sickness or disease. Family History – A record of the current and past health conditions of a person’s blood-related family members that may help show a pattern of certain diseases within a family. Genes – The part of a cell that contains DNA. The DNA information in a person’s genes is inherited from both sides of a person’s family. Gene Expression – Process in which a gene gets turned on in a cell to make RNA and proteins. Genetic Testing – Analyzing DNA to look for a gene mutation that may show an increased risk for developing a specific disease. Genome – The total genetic information of an organism. Genomic Testing – Analyzing DNA to check for gene mutations of a cancer tumor. Genomics – The study of genes and their functions. H o r m o n es – Chemicals made by certain glands and tissues in the body, often in response to signals from the

pituitary gland or the adrenal gland. Immunotherapy – Therapies that use the immune system to fight cancer. These therapies target something specific to the biology of the cancer cell, as opposed to chemotherapy, which attacks all rapidly dividing cells. Implant – An “envelope” containing silicone, saline or both, that is used to restore the breast form after a mastectomy. Informatics – The science of information; the collection, classification, storage, retrieval, and dissemination of recorded knowledge treated both as a pure and as an applied science. Invasive Breast Cancer – Cancer that has spread from the original location into the surrounding breast tissue and possibly into the lymph nodes and other parts of the body. Lesion – Area of abnormal tissue. Linear Accelerator – The device used during radiation therapy to direct X-rays into the body. Lumpectomy (Breast Conserving Surgery) – Surgery that removes only part of the breast – the area containing and closely surrounding the tumor. Lymph Nodes – Small groups of immune cells that act as filters for the lymphatic system. Clusters of lymph nodes are found in the underarms, groin, neck, chest and abdomen. Lymphedema – Swelling due

to poor draining of lymph fluid that can occur after surgery to remove lymph nodes or after radiation therapy to the area. Malignant – Cancerous. Mammogram – An X-ray image of the breast. M a ste c to my – Surgical removal of the breast. The exact procedure depends on the diagnosis. Medical Oncologist – A physician specializing in the treatment of cancer using chemotherapy, hormone therapy and targeted therapy. Metastasize – When cancer cells spread to other organs through the lymphatic and/or circulatory system. MRI (Magnetic Resonance Imaging) – An imaging technique that uses a magnet linked to a computer to make detailed pictures of organs or soft tissues in the body. Mutation – Any change in the DNA of a cell. Gene mutations can be harmful, beneficial or have no effect. Nipple-Sparing Mastectomy – A breast reconstruction procedure that removes the tumor and margins as well as the fat and other tissue in the breast, but leaves the nipple and areola intact. PET (Positron Emission Tomography) – A procedure where a short-term radioactive sugar is given through an IV so that a scanner can show which parts of the body are consuming more sugar. Cancer cells tend to consume more sugar than normal cells do. PET is some-

times used as part of breast cancer diagnosis or treatment, but is not used for breast cancer screening. Prognosis – The expected or probable outcome or course of a disease. Protein – Any of various naturally occurring extremely complex substances that consist of amino-acid residues joined by peptide bonds, contain the elements carbon, hydrogen, nitrogen, oxygen, usually sulfur and occasionally other elements. Proteomics – The cataloging of all the expressed proteins in a particular cell or tissue type, obtained by identifying the proteins from cell extracts. Prophylactic Mastectomy – Preventive surgery where one or both breasts are removed in order to prevent breast cancer. Radiation Oncologist – A physician specializing in the treatment of cancer using targeted, high energy X-rays. Radiation Therapy – Treatment given by a radiation oncologist that uses targeted, high energy X-rays to kill cancer cells. Ra d i o l o g i st – A physician who reads and interprets X-rays, mammograms and other scans related to diagnosis or follow-up. Radiologists also perform needle biopsies and wire localization procedures. RNA (Ribonucleic Acid) – A molecule made by cells containing genetic information that has been copied from DNA. RNA performs functions related to making proteins.

Sentinel Node Biopsy – The surgical removal and testing of the sentinel nodes – the first axillary nodes in the underarm area filtering lymph fluid from the tumor site – to see if the node contains cancer cells. Stage of Cancer – A way to indicate the extent of the cancer within the body. The most widely used staging method for breast cancer is the TNM system, which uses Tumor size, lymph Node status and the absence or presence of Metastases to classify breast cancers. Targeted Therapy – Drug therapies designed to attack specific molecular agents or pathways involved in the development of cancer. Herceptin is an example of a targeted therapy used to treat breast cancer Tomosynthesis (3D Mammography, Digital Tomosynthesis) – A tool that uses a digital mammography machine to take multiple two-dimensional X-ray images of the breast. Computer software combines the multiple 2D images into a three-dimensional image. Tu m o r – An abnormal growth or mass of tissue that may be benign (not cancerous) or malignant (cancerous). U l t ra so u n d – Diagnostic test that uses sound waves to make images of tissues and organs. Tissues of different densities reflect sound waves differently. Sources: Susan G. Komen, Federal University of Rio Grande do Sul, Brazil.

Windber’s research featured in top journal tions supported by the National Human Genome Research Institute and the National Cancer Institute, both part of the National Institutes of Health. The $300 million cancer genome project involved upward of 150 researchers at more than two dozen institutions across North America, the National Cancer Institute said in a press release.

BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

WINDBER – Scientists at Chan Soon-Shiong Institute of Molecular Medicine at Windber this year achieved what its vice president for research calls “a very important milestone” with research published in the science journal Cell. “Anybody publishing something there – some of them call that a career-defining publication; others call that career ultimate,” Hai Hu said at the Windber research institute. “It’s a very important milestone publication in terms of the quality of any scientist or any organization.” The research paper builds on Windber’s participation in the decade-long project mapping genetic makeup of cancer cells, known as The Cancer Genome Project. “ T h e In t e g r a t e d T C G A Pan- Cancer Clinical Data Resource to Drive High-Quality Survival Outcome Analysis,” was published in the April 5 issue of Cell as part of The PanCancer Atlas, a collection of papers across a suite of Cell journals. “Altogether, there were 27 papers published by this net-

‘Clinical data is useful’

JOHN RUCOSKY/THE TRIBUNE-DEMOCRAT

Research associate Preston Lehman checks samples at the Chan Soon-Shiong Institute of Molecular Medicine at Windber on Sept. 13. work in the Cell journal fam- Cell journal – the flagship jourily,” Hu said at Chan Soon- nal itself. Our paper was one of Shiong lab, 620 Seventh St., them.” Windber. “Six made it to the As a collection The PanCan-

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cer Atlas sums up the work accomplished by The Cancer Genome Atlas, which is a collaboration of research organiza-

be important in the cancer development or prognosis, but you don’t have hard evidence because you don’t know whether the patient was cured or had recurrence or if the patient died of the disease. That’s the importance of the clinical data.”

‘We look for trends’ The PanCancer researchers looked at analysis from thousands of cancer specimens, including many breast cancer specimens collected through Windber’s 19-year association with Walter Reed National Military Medical Center in Bethesda, Maryland. By matching up molecular and genetic characteristics of the cancer with clinical results showing the patients’ outcome, they were able to suggest some correlations, lead writer Jianfang “Jeff ” Liu said at the CSS Institute. “TCGA collected and generated an unprecedented set of clinical, pathologic and molecular data, but there were unanswered questions about the value and significance of its clinical data and how it might be used,” Liu said. “Results from this study have helped expand our knowledge of this data across cancer types and will prove valuable to future clinical and translational research.” Pan-cancer research is the study of cancer based on its molecular and genetic makeup instead of which organs it strikes in the body. The pan-cancer research published by Windber’s group may be used by scientists trying to identify targets for new cancer drugs, Hu said. “At the research end, we look for trends,” said Stella Somiari, senior director of the institute’s tissue bank. “We look for patterns and we make a conclusions about a pattern in relationship to a trend.

Windber’s research dug into data collected in the genome project to see how variations found in cancer cells affected clinical outcomes and survival of patients. A national team of experts led by Windber looked at data from more than 11,000 cancer patients across 33 cancer types. “It’s a huge amount of work,” Hu said. “I led a team of about 16 people from across the country who are cancer experts and bioinformatics experts.” Cancer researchers have embraced the cancer genome project’s results, which identified various genetic and molecular characteristics of cancer, but many have downplayed the use of clinical outcomes – how the patient fared. “The most usual comment (from researchers) is: ‘I’m not sure,’ ” Hu said. The Windber-led team has provided some sureness, Hu said. “We took a look at the details of the clinical data, and we found out that clinical data is useful,” he said. “We worked hard to that end – to add that to the premium quality of the molecular data.” Scientists have been using the molecular data generated by the genome project, but there are limitations, Hu said. “If you don’t have the outcome data, you are losing a huge amount of value of the molecular data,” he said. “(Molecular changes) may Please see JOURNAL, Page 7


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Through the years A look at some of the Breast Cancer Awareness section articles about the tissue bank in Windber from the past decade: Friday, October 1, 2010

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Sunday, October 2, 2011

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‘The highest standard’

“When our name gets out that we can provide information technology support for research, people will buy it.”

WRI adding freezers to tissue bank

TOM KURTZ, PRESIDENT, WINDBER RESEARCH INSTITUTE

‘Building relationships’

BY RANDY GRIFFITH

BY RANDY GRIFFITH

RGRIFFITH@TRIBDEM.COM

Growth opportunities are already showing up at Windber Research Institute through its association with the new Walter Reed National Military Medical Center in Bethesda, Md. Crews have been cleaning out an unused office at the Windber facility to make room for additional tissue banking freezers, Richard Mural, chief scientific officer, said. New freezers are being installed to receive frozen tissue specimens from the U.S. Military Cancer Institute’s research program. The cancer institute is contracting with Windber to handle its biobanking, Mural said. The new partnership with Military Cancer Institute grew out of the closing of venerated Walter Reed Army Medical Center in Washington and its reinvention as part of a joint military services health complex on the National Navy Medical Center campus in Bethesda. Windber leaders see the contract as a vote of confidence in Windber’s facility and research team, Mural said. The Military Cancer Institute joins the Walter Reed-based Clinical Breast Care Project in partnering with Windber. Tissue and blood specimens collected during breast biopsies at Walter Reed have been stored at Windber since it was founded in 2001. “The USMCI is part of this new group of cancer programs (at Walter Reed),” Mural said. “We take that as a good sign. “We have everything that is required for repository to the highest standard,” said Stella Somiari, tissue bank senior director. “They thought it would be a good idea to store the specimens here rather than redesign a whole new facility at Walter Reed.” Windber scientists will have limited access to the cancer institute’s tissues, if the projects meet cancer institute approval, Mural said.

WRI expands partnerships, eyes stability for long term BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

WINDBER – As it enters its second decade of cutting-edge science, Windber Research Institute is striving to become more financially diverse. “We went for seven years totally dependent on (congressional) appropriations,” Chief Executive Officer Tom Kurtz said at the institute’s 620 Seventh St. headquarters. Most of its breast cancer research budget is now written into the Defense Department budget through its partnership with Walter Reed Army Medical Center’s Clinical Breast Cancer Project. But any growth requires new sources of revenue, Kurtz said. Leaders are exploring two money paths: Finding sponsors for new studies and developing commercial markets for Windber’s specialties. The first obstacle encountered on both trails brings to mind the old cliche, “It takes money to make money.” Federally funded research does not allow any profit beyond expenses. “All of that is cost-reimbursed,” Kurtz said. “You can’t build a reserve. SUBMITTED PHOTO “We have to put some money The Windber Research Institute building, home to one of the world’s largest breast-tissue banks. WRI’s leaders are looking for funding streams other than government earmarks. in the bank.” Several fundraising initiatives second commercially marhave begun to develop Windketable program. ber’s new endowment fund, created to provide financial staWhile it is not legal to sell bility and develop a marketing human tissue, researchers are program. permitted to pay for the instiEarly results have brought tute’s expenses collecting and Windber into new projects out- distributing the samples. side the Walter Reed umbrella. “If we can establish that marA number of grants from the ket and have area hospitals proprestigious Susan G. Komen vide the tissue, there is a revBreast Cancer Foundation enue source we have not funded Windber research, and explored in the past,” Kurtz include a $6.7 million partnersaid, noting that hospitals will ship led by Thomas Jefferson also receive income. University in Philadelphia that “We never did that because will bring we did not about have the $500,000 to resources to the local area. establish a That project network of taps into researchers.” Windber’s Enter expertise in BioServe bioinformatBiotechnoloics, one of two gies Ltd. of programs Beltsville, Md. leaders feel Windber can be comwas enrolled mercially marearlier this keted. year as a char“Bioinfor“For researchers, it is ter member of matics is softthe BioServe going to be easier ware associatNetwork, ed with prowhich includthan doing the viding infored names like collection yourself to Fox mation techChase nology supCancer Center go into the network port for in Philadelof BioServe.” research,” phia, FairKurtz said. banks Insti“We did it STELLA SOMIARI, tute for out of necessiHealthy ComSENIOR DIRECTOR OF munities ty. There was in WRI’S TISSUE BANK Indianapolis nothing out there that and University TODD BERKEY/THE TRIBUNE-DEMOCRAT worked for us.” of Massachusetts Medical Brenda Deyarmin, a research associate at Windber Research Institute, uses a cryostat machine to cut tissue. At top, WRI President Tom Kurtz, left, visits Windber’s bioinformatics School in Worcester. with Joyce Murtha at the institute. program was developed under The company plans to serve the leadership of Hai Hu to as a clearinghouse for help catalog and analyze hunresearchers looking for samples. pate, and catalog blood samples Change of leadership at both dreds of thousands of pieces of “For researchers, it is going to and specimens from tissue hospitals, lack of funding and genetic, health history and be easier than doing the collec- removed during surgery. the research institute’s limited demographic information asso- tion yourself to go into the netWindber’s team of scientists space shut down the program. ciated with the research instiwork of BioServe,” said Stella is ready to provide the training New tissue collection at hostute’s tissue bank. Somiari, Windber’s senior and will handle all shipping pitals would be customized to The collection of frozen tissue director for the tissue bank. and distribution, Somiari said. researchers’ needs, Kurtz said. and blood samples donated by “The biggest is building relaThe National Institutes of In one recent study, for breast cancer patients at Walter tionships with hospitals,” Somi- Health supports the concept, instance, scientists wanted Reed and Joyce Murtha Breast ari said. she noted. blood samples from patients Care Center in Windber must Specimens collected through “They are trying to get into before they have a colonoscopy. be identified to the information the Army’s Clinical Breast Care the rural areas to develop a tis“Filling specific orders is the supplied by the donor. Project can’t be used outside sue bank network,” Somiari best way,” Kurtz said. “We don’t “When our name gets out that project. said. carry any inventory.” that we can provide informaThat means Windber “We are all set up for that.” There are attractions for hosVisit: 1920 Bedford St. tion technology support for Research Institute must conWindber even started collect- pitals, he said. Johnstown, PA research, people will buy it,” vince area hospitals and doctors ing some specimens outside the Besides participating in 814-262-2140 Kurtz said. that it’s worth a few extra min- breast care project at Windber important research, hospitals 1-866-962-0312 “If it was out there (before), utes to provide patients with Medical Center and UPMC can save in tissue-disposal costs we would have bought it.” information about tissue bank- Bedford, but those collections and actually receive some revThe tissue bank is Windber’s ing, ask if they want to particihave stopped. enue instead.

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RGRIFFITH@TRIBDEM.COM

TODD BERKEY/THE TRIBUNE-DEMOCRAT

Sean Rigby, a research assistant at Windber Research Institute, opens the lid of a new liquid nitrogen freezer in the tissue bank area. But the expansion of the tissue bank is the most exciting development, leaders stress. “There will be more than just breast samples,” Mural said. “They have a full range of tissue samples they have been collecting, and want to continue collecting.” Windber’s reputation for quality control and record keeping may encourage more Walter Reed research groups to

bring their tissue samples to Somerset County, Mural noted. “The collection of biospecimens and clinical demographics – life history data – has been really well defined (at Windber),” Mura said. “Some of the other Walter Reed programs don’t have tissue collection going on.” Windber’s specimen collecting procedures were set up through the Walter Reed part-

nership. It contains thousands of blood and tissue samples donated by patients undergoing breast biopsies at Walter Reed and the Joyce Murtha Breast Care Center in Windber. The system consistently has produced high-quality research samples. “The chances of doing that in a military hospital are great,” Mural said. “The structure is better able

“We have the possibility of becoming one of the central tissue banks.”

RICHARD MURAL, CHIEF SCIENTIFIC OFFICER, WINDBER RESEARCH INSTITUTE

to have standard operating procedures and common protocol. “You want to be very unified

THE TRIBUNE-DEMOCRAT / BREAST CANCER AWARENESS

Monday, October 1, 2012

Tissue bank, genome work put WRI on cutting edge WINDBER – Windber Research Institute’s reputation as a world class breast cancer program and tissue banking facility has paved the way for expansions into new areas of study. Since its inception in 2000, the heart of Windber’s program has been the breast cancer blood and tissue specimens in its ever­ growing lineup of high­tech freezers. For much of its early exis­ tence, Windber’s research was confined to the Clinical Breast Care Project with Walter Reed Army Medical Center in Wash­ ington. Now Windber will be the tis­ sue bank for all of the new Wal­ ter Reed National Military Med­ ical Center’s cancer research, Stella Somiari, tissue bank director, said at Windber. “In our work with Walter Reed, we’ve gone beyond the Clinical Breast Care Project,” Somiari said. “They are inviting us to be the storage center for all specimens that come from Wal­ ter Reed and its other facilities. We are expanding the tissue bank.” The new Walter Reed’s cancer center was not designed with a tissue bank. When U.S. Military Cancer Institute Director Col. Craig Shriver began talking with other leaders about possible locations, it didn’t take long for Windber’s name to come up. Shriver has been in charge of the Clinical Breast Care Project for most of its existence and is familiar with the quality Wind­ ber delivers, Somiari said. “It is fast­tracked,” Somiari said. “They have come to the understanding that there is no sense reinventing the wheel.” By selecting Windber, the fed­ eral government will save the cost of building and setting up a

new center, which would be modeled after Windber’s renown program anyway, Chief Executive Officer Tom Kurtz said Windber’s reputation has reached beyond the military with Windber’s participation in the Cancer Genome Atlas pro­ ject, sponsored by the National Cancer Institute and the National Human Genome Research Institute, both part of the National Institutes of Health. It involves hundreds of scien­ tists around the world working to map the DNA sequences for different types of cancers. The study requires the highest quali­ ty of frozen tissue samples, along with blood samples and, at least, a basic health history of each patient, Windber’s Chief Scientific Officer Richard Mural said. All that information has been a standard at Windber, but other breast cancer tissue banks were not always so diligent, Mural said. Working with hun­ dreds of larger programs and dozens of tissue banks, Wind­ contributions have ber’s accounted for more than 10 per­ cent of all those studied to date. “We are very proud of the fact that so many of the samples came from us,” Mural said. The study is envisioned to identify differences between cancer cells and normal cells at the molecular level, and design medicines to target those char­ acteristics without damaging normal cells, Mural said. “Cancer is a disease driven by genetic changes,” Mural said. “It is going to be a really major change in the way we think about diagnosis and treatment of breast cancer.” Tailoring the medicine for a specific individual’s tumor DNA is not as far­fetched as it once was, Johnstown medical oncolo­

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Breast cancer research remains at the core of Windber Research Institute. Scientists in the 620 Seventh St. laboratories examine disease at the molecular level, looking for similarities and differences in genetic information that could be associated with cancer. “There is a lot of good stuff going on,” Chief Scientific Officer Richard Mural said at Windber.

gist Dr. Paul Woolley said. He compares the science to research that led to antibiotics in the middle of the 20th centu­ ry. “Bacteria cells are different in many ways from human cells,” Woolley said. “Because they are different in select ways, drugs that will kill a bacteria cell can

Working together, Walter Reed, Windber Research Institute and Joyce Murtha Breast Care Center at Windber Medical Center have made some significant contributions to breast cancer research and treatment, said Col. Craig Shriver, director of the John Murtha Cancer Center at Walter Reed. One fourth of the cancer specimens used in the national Cancer Genome Atlas study to map the DNA of various breast cancers came from the tissue bank freezers at Windber Research Institute. “We are understanding cancer in a manner that was just not possible five years ago,” Shriver said during a recent visit to Windber. “Now, we know the molecular makeup of different kinds of breast cancer and some treatments are going to be developed.”

“We are doing a lot of work in cellular biology.” Much of the work involves tissue and blood samples and related information collected for more than a decade from cancer patients and those found to be cancer-free. The collection, housed in a growing lineup of high-tech freezers in Windber’s tissue bank, includes specimens collected from military health care facilities as part of Walter Reed National Military Medical Center’s Clinical Breast Care Project. Windber has been part of the project since it was launched. “We are looking at a broad range of data on the same breast specimens,” Mural said, listing DNA and RNA sequencing and protein analysis.

Cancer study Another project has the Walter Reed and Windber research group working with Berg LLC pharmaceuticals of Framingham, Massachusetts. The partnership is looking at how cancer is affected by the human body’s functions, such as metabolism, immune response and inflammation. Researchers with the Windber-Walter Reed Clinical Breast Care Project will do the experiments, which will be analyzed using advanced technology supplied by Berg, Shriver explained. Several studies are underway and more are being planned with the National Cancer Institute, located adjacent to the new Walter Reed campus in Bethesda, Maryland.

BY RANDY GRIFFITH

Summer internship programs at Windber Research Institute provide area college students with hands-on experience in a world-class laboratory. For Bishop McCort Catholic High School graduate and Penn State sophomore Kristen Woznick, an internship at WRI meant being part of ongoing study of genetic and chemical links between diet and the risk of cardiovascular disease. The Upper Yoder Township resident spent the summer working with studies developed during Windber’s collaboration with the Dean Ornish Program for Reversing Heart Disease at Windber Medical Center. “We were trying to take everything we could out of the data we found,” Woznick said. “I had two lab classes in college, but I had never done any analytical methodology. “This was taking it to the next level.” The real-world experience illustrated career options in Woznick’s chosen field. “It made me realize the research possibilities that have become available for chemical engineers,” she said. “It will broaden my options.” For California University of Pennsylvania senior Erika Varner, the Windber internship confirmed her decision to pursue a research career. “I love working in a lab,” Varner said. “I definitely know that I like it, and it’s where I want to go in the future.” Varner had taken lab classes in college, but the Windber research project was much larger, she said. Her group was examining specimens from Windber’s breast cancer tissue repository to see prevalence of an inherited risk of breast cancer. The group looked at samples from women who had “triple-negative” cancer, which is known to be more aggressive and less responsive to treatment. These cancers do not express the genes for three key treatment groups. Although results are still being compiled, Varner said, it appears about one of every five triple-negative cancer patients has inherited mutations in the cancer-suppressing BRCA1 gene. The information is valuable for patients with a family history of early-

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‘Big thing’ “For women with small breast cancer, rather than surgery, we stick a probe into the tumor, the laser destroys it and the probe is taken out,” Shriver said. “We are on the vanguard, studying that,” he continued. “That’s the next big thing. If this holds up, I can envision a time when we don’t have to do surgery on breast cancer.”

Meanwhile Windber is poised to solidify its partnership with the military, Kurtz said. After five years as WRI president and CEO, Kurtz was named interim Windber Medical Center president and CEO in February. The title was later made permanent. One of his first goals was to develop a strategic plan. “This is the first time in years we’ve been united under one leadership and one common goal,” Kurtz said, adding that the combined resources are addressing breast cancer in four areas: screening, diagnostics, treatment and research. The combination of Windber Medical Center, Joyce Murtha Breast Care Center, Windber Research Institute and Walter Reed National Military

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Medical Center is unique in a small community, Kurtz said.

Research program “Women who are treated for breast cancer at Joyce Murtha (Center) have an opportunity to participate in our research at WRI and Walter Reed,” he said. “We are using the strengths and talents of all four of those entities.” Windber’s success hosting the tissue bank for the Clinical Breast Care Project has expanded its role with the military’s health care network. Specimens for all types of cancer being studied at the Murtha cancer center in Bethesda are now being stored and cataloged in Windber. The WRI bioinformatics group, led

by Vice President for Research Hai Hu, is setting up the information technology system to handle research and biobanking aspects for the Joint Pathology Center in Silver Spring, Maryland. The federal government’s premiere pathology reference center supports the Military Health System, Defense Department and other federal agencies. “WRI is very much part of the national conversation in cancer research,” Shriver said. “Its biomedical informatics has really set the standard in cancer research. It has become so important that the Army has continued that repository as the epicenter of research in the national conversation for breast cancer and all cancer research in the future.”

PHOTOS BY JOHN RUCOSKY/THE TRIBUNE-DEMOCRAT

Mark Purazo, a scientist at Windber Research Institute, balances a pH for a buffer on Sept. 23.

Research expanding BY RANDY GRIFFITH RGRIFFITH@ TRIBDEM.COM

Please see WINDBER, Page 26

WHAT TO LOOK FOR New lump in the breast or underarm (armpit) that persists through the menstrual cycle. Thickening or swelling of part of the breast. Irritation or dimpling of breast skin. Redness or flaky skin in the nipple area or the breast. Pulling in the nipple or pain in the nipple area. Nipple discharge other than breast milk, including blood. Any change in the size or the shape of the breast. Pain in any area of the breast.

SETH RUMMEL, RESEARCH ASSISTANT

Swelling of all or part of a breast (even if no distinct lump is felt).

debate to say that maybe it was because of those older technologies that they were seeing changes and there really aren’t changes if you use those up-to-date technologies,” Rummel said. He is listed as an author of the research paper published in national cancer journals. “I feel it’s important to develop a project that can be done at an entry level in eight to 12 weeks,” Ellsworth said. “I’ve had multiple summer interns who are in publications that are out in major journals from Windber Research Institute. “Now when they prepare their resume, they have that.” Rummel’s resume brought him right back to Windber. In fact, he never really left. He was so involved in the research program, he continued to work part time through his senior year and joined the institute’s staff full time after graduation.

A change in the feel or appearance of the skin on the breast or nipple (dimpled, puckered, scaly or inflamed).

TODD BERKEY/THE TRIBUNE-DEMOCRAT

Research associate Jeff Meyer works on a “laser capture/micro dissesction” at Windber Research Institute.

‘Furthering new ideas’

Tissue bank, bioinformatics provide foundation for scientists’ work

on how you do your biobanking. We have the possibility of becoming one of the central tissue banks.”

“I was always interested in lab work. I didn’t know what I was going to do with my bachelor’s in biology when I got out of college. Doing my internship, I knew I found something I wanted to do when I got out of school for sure.”

seemingly normal tissue around breast cancer tumors. “The project dealt with looking at tissue that surrounds the tumor to see if there were genetic changes in that tissue that could be helping the tumor grow or metastasize,” Rummel said. “We took samples and actually isolated DNA from them. We put the samples on arrays and looked to see if we could find any genetic changes.” Although the study did not show any genetic changes in the surrounding tissue, Rummel said that doesn’t mean the study was a failure. “It’s always good,” Rummel said. “There was a controversy. A lot of studies showed there were changes in that tissue. The problem with those studies is they were done with technologies that were not exactly up to date.” The older studies looked at tissue preserved in paraffin wax, which has been shown to degrade DNA samples, he explained. “So it was good to put into the

THE TRIBUNE-DEMOCRAT

Page 17

On the national stage

Col. Craig Shriver, director of the John Murtha Cancer Center at Walter Reed National Military Medical Center, said significant contributions to breast cancer research and treatment have been made by working with Windber Research Institute and Joyce Murtha Breast Care Center at Windber Medical Center. With Shriver is Hai Hu, the institute’s vice president for research. “Through these partnerships, we are batting above our weight,” Shriver said. On the clinical front, Walter Reed’s doctors and researchers are participating in clinical trials to remove breast cancer tumors using lasers instead of scalpels.

RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT

or college for career day is, ‘Whatever you want to do, you better try it first,’ ” Ellsworth said. “If you are going to start medical school, law school, graduate school or college, you are putting a lot of money and a lot of time into your supposed career choice. You should get out there and try it.” Trying out lab work at Windber one summer helped launch research assistant Seth Rummel’s career. The Blacklick Valley High School graduate and Nanty Glo native signed on as an intern before his senior year at Pitt-Johnstown. “I was always interested in lab work,” Rummel said. “I didn’t know what I was going to do with my bachelor’s in biology when I got out of college. Doing my internship, I knew I found something I wanted to do when I got out of school for sure.” Rummel’s internship put him right into the world of breast cancer research. As part of Ellsworth’s team, he helped look for DNA changes in

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Windber tissue bank expanding in size and impact for medical research RGRIFFITH@TRIBDEM.COM

Research associates Heather Patney and Seth Rummel extract DNA for analysis at Windber Research Institute. Rummel, a Nanty Glo native and Blacklick Valley High School graduate, is a former intern at WRI whose resume brought him back to Windber.

onset breast cancer, Varner said. “There are different treatment options if you have BRCA mutations.” Varner said she is considering graduate school, but would like to work another summer at Windber. She is a Forest Hills High School graduate. At the same time the interns are gaining valuable experience, the research institute is fulfilling part of its mission to serve the local community. Although its cutting-edge approach to studying disease at the molecular level has attracted scientists from around the world, the institute was founded as an economic development tool. “It is a two-way process,” said Rachel Ellsworth, director of translational breast research. “It is incumbent upon Windber Research Institute to give back to the community by giving kids experience over the summer.” But the hands-on experience is crucial, she said. “What I say when I go to high school

S17 BREAST CANCER

Friday, October 1, 2010

THE TRIBUNE-DEMOCRAT / BREAST-CANCER AWARENESS

BY RANDY GRIFFITH

Interns gain valuable experience at WRI RGRIFFITH@TRIBDEM.COM

Page 22

Significant contributions

Much of the work involves tissue and blood samples and related information collected for more than a decade from cancer patients and those found to be cancer-free.

be targeted to the bacteria and Cost is also a factor in pushing ject took 15 years and cost sever­ not kill human cells. personalized medicine and al billion dollars,” Kurtz said. “I always thought, and I still DNA mapping. Although the “Now you can do an individual’s do, there would be a time when tests are still expensive, they are genome in a few days for a few we would understand the differ­ no longer out of reach. In fact, thousand dollars.” “That’s one of the reasons peo­ ence between a cancer cell and a successfully targeting a specific normal human cell. We are get­ breast cancer tumor could save ple are looking at this. For the ting more and more close to that money if it effectively cures the cost of some of the standard point. It has become a new cancer, Kurtz said. Please see WRI, Page 31 game.” “The first human genome pro­

Page 11

THE TRIBUNE-DEMOCRAT / BREAST CANCER AWARENESS

As government funding for medical research shrinks, organizations are finding new ways to pool resources and continue their work. That’s one reason the 15-year-old partnership between Walter Reed National Military Medical Center, Windber Research Institute and Windber Medical Center is stronger than ever, said Tom Kurtz, president and CEO of the two Windber facilities. “Military medicine is probably the nation’s best bang for its buck to help keep active servicemen and women healthy,” Kurtz said. “Clinicians in the military are second to none, and we feel these civilian partnerships help strengthen the military.”

At Windber Research, ‘There is a lot of good stuff going on’

RGRIFFITH@TRIBDEM.COM

PHOTOS BY TODD BERKEY/THE TRIBUNE-DEMOCRAT

Thursday, October 1, 2015

Civilian partnerships strengthen breast cancer research, treatment BY RANDY GRIFFITH RGRIFFITH@ TRIBDEM.COM

BY RANDY GRIFFITH

Scenes from Windber Research Institute, clockwise from top: Jeff Meyer, a research assistant slices a frozen sample of breast tissue; Sean Rigby, a research assistant, looks at a freezer rack inside of a tissue bank room; and the new machine used in developing DNA sequences for different tyes of cancers.

Wednesday, October 1, 2014

THE TRIBUNE-DEMOCRAT / BREAST CANCER AWARENESS

‘Military medicine’

Page 25

Shining brightly

Brenda Deyarmin, a scientist at Windber Research Institute, uses a micro-dissection scope to view a breast cancer slide on Sept. 23.

An area that is distinctly different from any other area on eitherbreast. A marble-like hardened area under the skin. SOURCES: CENTERS FOR DISEASE CONTROL AND PREVENTION AND AMERICAN CANCER SOCIETY

WINDBER – Two resources at Windber Research Institute have overarching benefits to virtually every other activity in the facility: The Richard Mural Tissue Repository and the bioinformatics system. Stella Somiari, tissue bank senior director, and Hai Hu, senior director of bioinformatics, were among the first employees at the research institute. Hu’s first office was a modular unit outside the institute’s original office suite in Windber Medical Center. In those days, the tissue repository was one high-tech freezer in the hospital building. Today, there are more than a dozen units, expanding into more areas of the institute building. It contains more than 61,000 tissue and blood specimens from more than 7,000 individuals, Somiari said. Specimens come from women who agree to participate in research while being tested or treated for breast cancer through Joyce Murtha Breast Somiari Care Center in Windber; Walter Reed National Military Medical Center in Bethesda, Maryland; or Anne Arundel Medical Center in Annapolis, Maryland. Somiari is looking for more collection sites, but meets with resistance. Participation requires some extra work with each patient. The Joyce Murtha center, for instance, has one employee dedicated to the research program. “If we had a way, we’d go to every hospital,” Somiari said. “Those (specimens) are just being thrown away.” Tissue banking has come a long way from its origins, she said. Each specimen is connected to a complete file on the patient and the cancer. It includes tumor characteristics, demographic information and patient medical history, prognosis, treatment and outcomes. The facility this year became one of two tissue banks accredited by the College of American Pathologists. The University of Pittsburgh also has earned accreditation. Accreditation shows researchers from other institutions that Windber follows the best practices accepted by scientists. “In the old days, they just pulled them

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The institute contains more than 61,000 tissue and blood specimens from more than 7,000 individuals. out and threw them into the freezer,” Somiari said. “They are trying to standardize the process of collecting and categorizing and storing. We keep track of the time tissues came out of the patient and when it was processed and stored. “You give that to the researcher and make sure the research is also standardized,” she continued. “It makes science better. You give bad stuff to the researcher, you get bad science out of it.” All of the data collected with the tissue and blood samples are cataloged digitally for future studies. Researchers can drill down into the data to compare details for Hu groups of patients or tumors, Hu said. That is what bioinformatics is all about. Scientists studying tumor properties are comparing thousands of characteristics in millions of cells. It takes some serious computer help. Windber’s system has been so successful that Hu’s group is developing a bioinformatics system for the John Murtha Cancer Center at Walter Reed. One ongoing study is comparing cancer incidence and outcomes for patients who had previously been diagnosed with noncancerous lesions. Several lesions are more common in patients who later got cancer. “They are positively associated with cancer,” Hu said. Those diagnosed with certain other lesions were less likely to get cancer. “Those are negatively associated with cancer,” he said. Like most research, the lesion invites follow-up investigation to see if the early lesions are, indeed, risk factors for cancer, he said.

Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.

Tissue bank puts WRI in elite company BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

WINDBER – Tumor samples supplied by local cancer patients are being studied in one of largest breast-cancer research projects in history. Selection to participate in the ambitious Cancer Genome Atlas project puts Windber into an elite group of research organizations. “Windber Research Institute and Walter Reed (Army Medical Center) will contribute mightily to the genome atlas,” said Col. Craig Shriver, director of the Clinical Breast Care Project at Walter Reed in Washington, D.C. “It is really a statement of confidence by the National Institutes of Health.” The Cancer Genome atlas is a joint project of the National Cancer Institute and National Human Genome Research Institute, both in the National Institutes of Health. The project will map the genetic makeup of as many breast cancers as possible. Already, about 20 specimens from Windber’s state-of-the-art tissue bank are in the process of having their DNA sequenced, Chief Scientific Officer Richard Mural said. The project leaders expect to sequence about 1,000 tumor samples. The knowledge could revolutionize cancer medicine by customizing treatment for each patient, Mural added. “It is becoming the Holy Grail of not only cancer research but cancer treatment,”

Wife’s ordeal fuels doctor’s medical quest

WINDBER – Even as the Chan Soon-Shiong Institute of Molecular Medicine at Windber expands onto the national stage and branches research areas beyond breast cancer, the tissue bank remains as its hallmark. This year, the former Windber Research Institute expanded its tissue bank capacity, installing additional liquid nitrogen freezers and another tank to hold the super-cooled liquefied gas. Stella Somiari, senior director of the tissue repository, said the facility now holds about 70,000 specimens, including tissue and blood samples, from nearly 12,000 different individuals. When the research center was founded in 2000, it was set up through federal Department of Defense funds earmarked through the efforts of the late U.S. Rep. John Murtha. The institute was established exclusively to study breast cancer as part of then-Walter Reed Army Medical Center – now Walter Reed National Military Medical Center in Bethesda, Maryland. That project and mission remain at the heart of Windber’s program. But Somiari said the tissue bank, also known as a biobank or biorepository, has expanded to broader research efforts, bringing specimens from a wide range of patients – both male and female. Because of the additional research, the tissue bank’s already robust collection protocol had to be expanded to gather more data about patients’ conditions and personal information, Somiari said. “With the tissue bank, everything changes depending on what you study,” Somiari said. “When we are collecting for the purpose of research, collection protocols have to be as broad as possible.” The extra steps taken by Windber have qualified the lab to supply National Cancer Insti-

RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT

Stella Somiari (left), senior director of the biorepository, and research associates Sean Rigby and Katie Miller check specimens in one of the freezers at Chan Soon-Shiong Institute of Molecular Medicine at Windber on Sept. 15. tute studies. The center is certified by the federal Clinical Laboratory Improvement Amendments program under the Centers for Medicare and Medicaid. The certification also allows Windber’s program to accept specimens from patients still undergoing care during clinical trials. Before earning the CLIA recognition, Windber was limited to tissue from patients donated following treatment. Windber’s biobank currently

serves as the central repository for much of the research done by Department of Defense and a growing segment of federal cancer research programs. Scientists use the molecular information extracted from the cancer cells to look for patterns, Somiari said. With frozen tissue and blood samples, researchers can see how different agents affect cancer growth without endangering patients.

“When you study on human tissue, the advantage is the human environment,” she said. By comparing tissue samples and patients’ outcomes included in the biobank’s database, scientists can match the behavior of cancer types or patients from different demographic groups with the same cancer. “They can study why some patients, after treatment, have remission and why some other patients have recurrence – and

usually it metastasizes,” Somiari said. Through Windber’s participation in the federal Applied Proteogenomics Organizational Learning and Outc o m e s ne tw o rk, t he c e nter will store samples from another 8,000 patients. The APOLLO network will study cancer at a molecular level never attempted by smaller research projects, Walter Reed’s Col. Craig

Shriver said. Shriver is director of the John P. Murtha Cancer Center at Walter Reed. He is principal investigator for the Clinical Breast Care Project. “Those tissues hold the key to the biology of how the cell unfolds,” he said. Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.

BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

A medical career devoted to breast cancer patients and research only added to the emotional tempest that Col. Craig Shriver experienced when learning his wife was diagnosed with the disease. “It’s not easy being on the receiving end when somebody you care about is undergoing treatment,” Shriver said. His work in breast cancer started when he was selected for advanced fellowship training in surgical oncology at the prestigious Memorial SloanKettering Cancer Center in New York. “One of the big emphases there was breast cancer,” said Shriver, who now leads the Clinical Breast Care Project at Walter Reed Army Medical Center, with a research component in Windber Research Institute. Shriver was lead investigator TODD BERKEY/THE TRIBUNE-DEMOCRAT at one of only 10 medical cenHai Hu, standing, deputy chief scientific officer and senior director of biomedical informatics, leads a discussion with his colleagues at Windber Research ters clinical study of sentinel lymph node biopsy in breast Institute. WRI’s experts study cancer at the cellular level. cancer. He co-authored the October 1998 New England Journal of Medicine article Mural said. programs we sat down and announcing the study’s results, “We will be sequencing indidecided what we wanted to do,” “At the very start of these programs we sat which helped reduce the numvidual tumors from individual Somiari said. “The idea was to down and decided what we wanted to do. ber of lymph node biopsies for patients to map treatment. It is build a tissue bank for furtherbreast cancer patients. going to be the next frontier, ing new ideas that come along The idea was to build a tissue bank for “That really cemented my and I think we are very well the way.” furthering new ideas that come along the interest in breast cancer,” Shrivpoised to be a big part of that Breast cancer patients at er said. It also made him a natfuture.” Joyce Murtha Breast Care Cenway.” ural choice to lead the Army’s Helping future cancer ter and Walter Reed have been project, created in 2000 patients by providing specivoluntarily donating tissue STELLA SOMIARI, through legislation sponsored mens for new studies has specimens for nearly a decade by the late Rep. John Murtha. always been Windber’s vision, through their collaboration in SENIOR DIRECTOR OF WRI’S TISSUE BANK Shriver had just come back said Stella Somiari, tissue bank the Clinical Breast Care Project. from a tour of duty in senior director. The resulting collection, their cells’ genetic expression to and other military facilities par- Afghanistan when Hope Shriv“At the very start of these housed in Windber’s facility, is those of cancer patients, lookticipating in the project. The er went for her annual mamrecognized as among those of ing for differences. samples are shipped overnight mogram. “There was cancer,” the highest quality in the world, One of the tubes is processed in dry ice, with precautions to the veteran Army officer said, Shriver said. for plasma, one for serum and preserve the integrity if transcharacteristically stoic in recallone for the analysis of RNA, or portation is delayed. ing the events. “Fortunately, it Step by step ribonucleic acid, which trans“We have to keep all the ship- is coming out well.” mits genetic information from ping information and maintain The personal connection only Auto Sales The tissue-banking process the DNA to areas of the cell. contact until it gets to us,” cemented his commitment to begins when a woman first Minute tissue samples are Somiari said. “When it comes, the research component of the arrives for her mammogram, then collected from the biopsies you have to check all that. Clinical Breast Care Project. Somiari said. of volunteers. All specimens are “Everybody in the tissue bank “Her samples reside up there “When a patient walks into either frozen or embedded in is trained and gets certified in in Windber,” Craig Shriver said, Joyce Murtha Breast Care Cen- paraffin for preservation. using humans in research.” referring to Windber Research ter, they tell them about the Everything is stored and filed If scientists at Windber or Institute’s renowned tissue protocols and ask the if they according to number, which Walter Reed want specimens bank. Hope Shriver did not want to participate,” she said. refers to a database that for their research, they must hesitate in agreeing to particiThree tubes of blood are includes patients’ health history write a one-page proposal for pate in the study when doctors drawn from all volunteers. and demographic information review by the institute’s comat Walter Reed asked for conPatients who are not diagwithout identifying the women, mittee. Tissue samples for those sent, her husband said. nosed with cancer serve as the Somiari said. studies are subject to scrutiny “I think research is the way control group for studies. Additional specimens come similar to the collection forward,” Craig Shriver said. “I Researchers can compare to Windber from Walter Reed process, Somiari explained. really do believe in the project.”

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Seeking a cure Scientists, backed by federal agencies, study cancer at molecular level BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

WINDBER – A multi-agency government cancer research program has its roots in work that started nearly 20 years ago with one freezer unit and some advanced computer equipment in a wing of the former Windber Medical Center. The Clinical Breast Care Project of Walter Reed Army Hospital began in 2000 as a partnership with the Windber hospital, now Chan Soon-Shiong Medical Center at Windber, and then-newly founded Windber Research Institute. The collaboration has grown to include all forms of cancer research through what is now Walter Reed National Military Medical Center in Bethesda, Maryland. Studies involve tissue specimens taken from cancer tumors and benign tissue, along with blood samples and anonymous patient data sets collected at military medical facilities around the country, and at Joyce Murtha Breast Care Center in Windber. The specimens are cataloged with details about the cancer, the patient, treatment and outcome using software developed at the research institute, now Chan Soon-Shiong Institute of Molecular Medicine at Windber. The tissue and blood are stored in a growing collection of high-tech freezers in the institute’s Richard Mural Biorepository, commonly called the biobank or tissue bank. There are now more than a dozen barrel-sized freezers that use liquid nitrogen to keep tissue samples frozen for storage. Studies on the tissue generally fall into two areas: • Proteomics, which analyzes molecular makeup of the proteins created by cancer cells and normal cells to look for differences that could be targets for cancer drugs. • Genomics, which looks at the genetic makeup of the cells to identify those cancer targets. Because both approaches involve thousands of pieces of information, they are analyzed using specially developed computer programs. The science of processing data for storage and retrieval is called informatics. When applied to cellular research, the process is sometimes called bioinformatics. California cancer surgeon

JOURNAL Continued from Page 6

“Windber has built its strength in biobanking and informatics. That’s where we are centering everything we do here at Walter Reed. It is rests on those programs at Windber.”

JOHN RUCOSKY/THE TRIBUNE-DEMOCRAT

Research associate Amber Greenawalt looks over samples, above, at the Chan Soon-Shiong Institute of Molecular Medicine at Windber on Sept. 13. Below, a story in the April 29, 2000, edition of The Tribune-Democrat announces the creation of a research center between what were then known as Windber Hospital and Walter Reed Medical Center.

RETIRED ARMY COL. CRAIG SHRIVER, DIRECTOR OF THE JOHN P. MURTHA CANCER CENTER Dr. Patrick Soon-Shiong – who has been called the richest man in medicine – purchased the Windber centers in 2015 through his NantWorks organization. Soon-Shiong is minority owner of the Los Angeles Lakers and recently purchased the Los Angeles Times. Soon-Shiong has said his medical mission is to revolutionalize how doctors tackle cancer by personalizing treatment for patients – even in rural areas.

APOLLO project takes off Success of Walter Reed’s research has attracted the interest of other agencies, which have gotten together as the Applied Proteogenomics Organizational Learning and Outcomes network, also called the APOLLO project. The network represents a collaboration between National Cancer Institute, the Department of Defense, and the Department of Veterans Affairs to explore cancer at the molecular level. There are four pilot studies underway using existing specimens, primarily from Windber’s biobank, and with analysis and cataloging with an informatics network developed and managed by Windber’s experts. The APOLLO pilot studies have begun analysis of unique proteins found in the cells of breast, lung, prostate and gynecological cancer patients. “ Windber has built its strength in biobanking and informatics,” said retired Army Col. Craig Shriver, director of the John P. Murtha Cancer Center. “That’s where we are centering everything we do here at Walter Reed. It is rests on those programs at Windber.” Both areas will soon require additional expansion, both in infrastructure and staff, Shriver said. Stella Somiari is senior direc-

tion, Chan Soon-Shiong Family Foundation. “The understanding of the molecular profile relative to clinical outcomes is invaluable to clinical scientists pursuing next-generation treatment for patients suffering from cancer,” Soon-Shiong said. “We are proud to support this important new resource and to make this resource available to scientists and biologists around the world who are striving to unravel the molecular drivers of cancer.”

“The data they have provided can help researchers design new experiments in line with the observations,” Somiari said. “Because the more data that speaks the same result, the better the chance that that data will lead to the clinical treatment.” Attacking cancer based on it’s molecular makeup dovetails Randy Griffith covers health well with the focus on immunotherapy championed by Dr. care for The Tribune-Democrat. Patrick Soon-Shiong, chairman Follow him on Twitter @phoof Windber’s parent organiza- togriffer57.

tor of the biobank, where nearly 10,000 specimens are now stored for future and ongoing research. “All of the centers that will be contributing tissues to APOLLO will all be working through our biobank,” Somiari said. “We will be working with other centers to determine how the tissue will be collected – writing the guidelines. “It will be coming to Windber.”

Storing tissue and information Tissue banking, also called biobanking, for research is more than storage. Detailed information is maintained for each specimen, including cancer type, genetic makeup and protein profile – along with information about the patient’s age, health, race, socioeconomic situation, medical treatment and clinical outcome. Additional analysis will be done on new tissue to meet specific research needs defined by the scientists leading future projects, she added. “We will work with the general team to process and ship to other centers,” Somiari said. “We will be doing very specific analysis of the tissue to ensure the material is formatted as needed and sent to the specialized technical centers for the next level of analysis.” Studies of breast, lung, prostate and gynecological cancers are already underway by APOLLO researchers, using existing material, said Hai Hu, Windber’s vice president for research. Hu develops and oversees the informatics infrastructure used to catalog millions of data points for the specimens being studied, as well as results of those studies, which can be related back to the specimens and the original patient profiles. “We are using them as a pilot

nized and accessible, researchers can use the file sets to identify possible new research, Windber scientist Leonid Kvecher said. “With data mining, here’s the data; do whatever you can,” Kvecher said. “If you find something meaningful, design the experiment.” The advancing world of cancer research has required some adjustments at the Chan SoonShiong Institute. Many of the traditional testtube, lab-bench research has been automated or outsourced, Hu said. “Technology has evolved a lot,” he said. “In the past, one professor could start a lab doing one molecule for the whole life of the professorship. Data mining “It’s a thing of the past. Nowadays thousands or tens of at the DNA level thousands of genes and proGenome sequencing involves teins can be studied at the same analysis of the cells’ basic build- time.” ing blocks: DNA, or deoxyribonucleic acid. Scientists break Growing area the DNA down to the sequence of science, medicine of compounds known as nucleWindber had two genome otides that make up nucleic acid. They are compounds that sequencing machines, but Hu include nitrogen, carbon sug- said the analysis is better done ars and phosphate. The process by specialists. “That sequencing is done most is sometimes called genome efficiently at a sequencing center,” sequencing. RNA, or ribonucleic acid, is Hu said. “Heavy duty sequencpresent in all living cells. It acts ing is the mainstream study right as a messenger from DNA for now for genomics. Following these trends, we are outsourcing controlling how cells function. If the information is orga- this work.”

study for the (future) studies,” Hu said. “We can go through the path from beginning to end using these four pilot studies so we can better prepare for the major studies.” Researchers may include examining such areas as cancer grading – the extent cancer has spread from the original site; hormone receptors – parts of the cancer cell that attract hormones, which regulate cell functions; and analysis of lymph nodes – tiny bean-sized glands in the body’s lymphatic system, where cancer cells often travel. “We are studying full genome sequencing, RNA and global proteomics,” Hu said. “It is all being put together for analysis.”

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But the expansion of programs in the institute’s wheelhouse areas of informatics and biobanking has required additional staff, with more expected, Somiari said. Tom Kurtz, president and CEO of both Chan SoonShiong Medical Center and the research institute, said employment has fluctuated between 40 and 50 staff positions in recent years. “Next year, we are budgeting for 50,” Kurtz said. “Our work has increased,” Somiari said. “We may be needing more people to help us do what we are doing.” In a 2016 interview with The Tribune-Democrat, SoonShiong said the research happening at the Windber center will help revolutionize treatment by allowing doctors to better understand the specific nature of an individual patient’s cancer concerns. “The solution was to take the tissue and allow the tissue to speak to you about what’s going on with that cancer,” SoonShiong said. “Then develop a vaccine to fight it so that the human body’s own immune system is going to kill this cancer.” Randy Griffith is a multimedia reporter for The Tribune-Democrat. He can be reached at 532-5057. Follow him on Twitter @PhotoGriffer57.


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Mammography technologist Tina Dibert, at right, uses a Brevera breast biopsy system to look for anomalies at Joyce Murtha Breast Care Center in Windber on Sept. 17. Below, ultrasound technologist Cathy Klucik (left) examines patient Makenna Topka of Central City at Joyce Murtha Breast Care Center. Each imaging technology has its own strength for diagnosis, experts say. JOHN RUCOSKY/ THE TRIBUNE-DEMOCRAT

‘If you find something ...’ Detection of a lump often means more imaging, biopsy

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Diagnosis for breast cancer starts with an abnormal mammogram or lump found in the breast. Fortunately, most suspicious mammograms and breast abnormalities are not cancer, but patients should follow up with more tests. Frequently, the breast radiologist will start with a second, diagnostic mammogram, often with an ultrasound image during the same visit. “If you find something on a mammogram, you are generally going to have an ultrasound at the same time,” Dr. Renée Arlow, breast surgeon, said at Conemaugh East Hills outpatient center. In certain cases, especially for women with dense breast tissue, a magnetic resonance image may be ordered. Each imaging technology has its own strength for diagnosis, the experts say.

Diagnostic mammograms are increasingly done with 3D technology, called tomography. “Those are very useful for identifying calcifications that can be associated with very early breast cancer,” Dr. Trudi Brown, breast surgeon, said at Joyce Murtha Breast Care Cen-

ter in Windber. “It is also good for finding architectural distortion – where the breast tissue looks different.” Ultrasound can help determine if a breast lump is liquid-filled or solid.

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RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT

Mary Elko (right), mammography technologist, demonstrates the 3D mammography system for (from left) Dr. Trudi Brown, breast surgeon; Kim Knapp, research nurse; and Tess Kostan, nurse, at Joyce Murtha Breast Care Center of Chan Soon-Shiong Medical Center at Windber.

Annual mammograms are still best practice, experts in region say BY RANDY GRIFFITH

“There are studies that reduce or eliminate mammograms after age 60 or 65. I think it’s absolutely insane. I say keep having them until (patients) don’t know what they are doing or they can’t get out of bed.”

RGRIFFITH@TRIBDEM.COM

Breast cancer experts across the region are united in their recommendation for regular screening mammograms for early detection of breast cancer. Despite some studies suggesting fewer screenings, longtime Johnstown breast surgeon Dr. Patti Ann Stefanick insists that she is still a “mammogram person.” “I don’t think anybody could not be a mammogram person,” Stefanick said at her 939 Menoher Blvd. office. Some organizations have issued new recommendations calling for mammograms every two years, beginning at age 50. Some suggest screening mammograms be eliminated for those over 70 because breast cancer is usually slow-growing. Older women with breast cancer are more likely to die of a heart attack, stroke or other disease, the logic goes. Stefanick disagrees. She follows American Cancer Society guidelines for annual mammograms beginning at age 40 for women with average risk factors. The decision to stop getting mammograms depends on the patient, but age is a major risk factor for breast cancer, she said. “When you are 60 or 70, in my opinion, of course you get your mammograms,” Stefanick said. “As you get older, the numbers get worse – they don’t get better.” Windber breast surgeon Dr. Trudi Brown also recommends annual mammograms for those age 40 and older. “There are studies that reduce

DR. TRUDI BROWN, CHAN SOON-SHIONG MEDICAL CENTER AT WINDBER’S JOYCE MURTHA BREAST CARE CENTER or eliminate mammograms after age 60 or 65,” Brown said at Chan Soon-Shiong Medical Center at Windber’s Joyce Murtha Breast Care Center. “I think it’s absolutely insane. I say keep having them until (patients) don’t know what they are doing or they can’t get out of bed. The 80-year-old patient of today is not the 80-year-old of 20 or 30 years ago. There is so much living left to do.” New guidelines allow some breast cancer patients over 65 to avoid radiation therapy following a lumpectomy, Brown said.

Family history Those with a significant family history of breast cancer should start their annual screenings at an even earlier age, breast surgeon Dr. Dan Clark said at Indiana Regional Medical Center. “Organizations with breast experts say you should have a baseline mammogram at age 40 and then yearly after that,” Clark said. “If you have a family history, you should start screening when you are 10 years younger than the youngest person in

your family was when they got diagnosed with breast cancer.” Most of the guidelines with PHOTOS BY RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT fewer screenings are based on studies completed before wide- Dr. Lauren Deur, above, radiologist at UPMC-Altoona’s Station Medical Center, said that improved technology, such spread use of 3D mammogra- as the 3D mammography machine demonstrated by Diane Knee, below, has made early screening even more valuable phy, known as breast tomog- in detecting breast cancer. raphy or tomosynthesis, Clark said. “Mammography has improved,” Clark said. “It’s a lot better at picking things up on a screening mammogram. Our new 3D mammography is a lot better than digital, and a lot better than plain film.” The new technology has improved early detection, said Dr. Lauren Deur, radiologist at UPMC-Altoona’s Station Medical Center. “When they did those studies, mammography was not quite as good as it is now,” Deur said. “We have improved our technology. It has decreased the amount of callbacks, and increased the number of cancers that are found.” The improvement should save more lives, Brown said. “ Tomography has really improved the traditional mammography,” Brown said. “It allows us to identify small lesions, especially in patients with very dense breasts.”

‘Let the woman decide’

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Despite ongoing public awareness campaigns culminating each year with National Breast Cancer Awareness month activities in October, some women are still skipping their mammograms. Confusion about the guidelines is not the only reason, Clark said. “It is still surprising how many don’t get mammograms.” Clark said. “There is a lot of fear factor and denial, but it is so much better if we can get in early. “Look at the results on the end. Survival has improved dramatically in the last 20 years.”

The decision to get regular screenings should be made after discussing the benefits and risks with a primary care doctor or gynecologist, Deur said. “There are pros and cons,” Deur said. “We are improving things. We are making it better for our patients. The biggest problem is the referring doctors are not explaining the situation.

“You need to have the conversation. Let the woman decide.” That’s especially true for older patients, Conemaugh Health System breast surgeon Dr. Renée Arlow said at Conemaugh East Hills, 1450 Scalp Ave. “Stopping mammograms really depends on the patient,” Arlow said. “It’s about the life

expectancy. If something is found: Would they want to pursue it, or would they prefer not to know? “We should offer them as long as the patient wants them.” Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.


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Screen time? Some debate benefits of mammograms, point to potential harm BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

Not everyone supports the routine use of screening mammograms. A number of experts cite studies that suggest declining breast cancer death rates may have more to do with advances in treatment than screening campaigns. “All women should know something: There is no reliable evidence that routine mammograms for healthy women save lives,” nursing professor Anne Kearney, of Memorial University of Newfoundland, wrote last year in “The Conversation Canada” online magazine. “There is good evidence that such mammograms can cause harm,” Kearney continued. Kearney’s column cites studies, including the Canadian National Breast Cancer Screening Studies, which conclude that for every breast cancer death prevented by screening, multiple patients have undergone unnecessary breast cancer treatments.

“There is not a single breast expert on the panel looking at those results. There have been other studies that show increased survival by having mammograms start in the 40s.” DR. DAN CLARK, BREAST SURGEON, INDIANA REGIONAL MEDICAL CENTER METROCREATIVECONNECTION

Mammograms previously had been recommended for women beginning at age 40. Some organizations have altered that to make 50 the starting age, but most local experts still adhere to the Similar studies led the Unit- previous standard in hopes of catching cancer sooner. “The younger the woman, the more aggressive the cancer is,” said Dr. Kristy Wolfel, Conemaugh Health System breast radiologist.

ed States Preventive Task Force to recommend delaying screenings until age 50, and then doing them every other year. The task force stressed that women should be able to make informed decisions about the tests. “The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harm,” the task force wrote. But all the local experts interviewed by The Tribune-Democrat – along with many national organizations – continue to support annual mammograms for healthy women beginning a age 40. In fact, two other Canadian experts wrote a rebuttal for Kearney’s’ article for a later edition of the same magazine, “The Conversation Canada.” Paula Gordon, medical director of the Sadie Diamond Breast

radiologist at UPMC-Altoona, says the studies compare how many lives are saved to how much is spent and how many unnecessary tests and treatments are performed. Those costs and the stress involved are called the screenings’ “harms.” “I think harm is a bad word,” Deur said. “Even though there are different recommendations out there, in the fine print of all those reports, it says there is no debate about the fact that mammography saves lives. The debate is about how many lives are worth it. “I don’t have to do that math. If it’s one life, it’s worth it.” Conemaugh Health System breast radiologist Dr. Kristy Wolfel also takes issue with the statistics-based recommendations. “They have those numbers in ‘One life ... worth it’ front of them,” Wolfel said. “If you see mammography every Dr. Lauren Deur, a breast day, you see the impact. That’s Program at University of British Columbia’s Women’s Hospital, and Martin Yaffe, senior scientist at University of Toronto’s Sunnybrook Research Institute, said some of the studies Kearney cited were outdated. “As researchers who have worked in the field of breast cancer detection for decades, we know that exactly the opposite is true — there’s overwhelming evidence that earlier detection of breast cancer by mammography screening, combined with modern therapy, reduces deaths from breast cancer markedly,” Gordon and Yaffe wrote. “We believe that women should decide for themselves whether to participate in screening after they have all the facts.”

not a number I have; that’s a patient.” She recommends annual mammograms, beginning at age 40. “I’ll never deny that between age 40 and 50, the chances are not that high,” Wolfel said. “But, usually, those women who get breast cancer at an early age, theirs is more severe. I’ve seen cancers grow in six months. In two years, you will likely metastasize. The younger the woman, the more aggressive the cancer is.” The U.S. Preventive Task Force breast cancer guidelines issued in 2016 have shaken the breast cancer world, breast surgeon Dr. Dan Clark said at Indiana Regional Medical Center. “The government has created the controversy,” Clark said. “There is not a single breast expert on the panel looking at those results. There have been other studies that show increased survival by having

mammograms start in the 40s.” Clark supports annual mammograms from age 40. “I am biased by my clinical practice,” Clark said. “I see a lot of women in their 40s with

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Dr. Kristy Wolfel, a radiologist, looks over an MRI of a breast image at Conemaugh East Hills. Wolfel said that while MRIs can be useful, ultrasound is often the best imaging tool to use during a biopsy.

IMAGING Continued from Page 9 “Ultrasound is great if you have a mammogram that shows no lesions, but you still think there’s something,” Brown said. “It can separate a cystic lesion from something that’s solid. If you have a solid mass: that’s more concerning.” Ultrasound can also help evaluate the architectural distortion found

on a mammogram.

‘The time factor’ If a suspicious lesion is identified, the radiologist or surgeon can take a tiny sample of the tissue and have its pathology analyzed to determine if the material is cancer or a benign structure. Years ago, the biopsy would require a trip to the operating room and an incision. Advances in technology allow doctors to use a needle-like tube

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“For a lot of patients, the time factor is a big thing for them. They don’t want to wait to know.” DR. TRUDI BROWN, JOYCE MURTHA BREAST CARE CENTER IN WINDBER to remove a tiny sample of the lesion for testing. Image-guided biopsies using mammograms, MRI and ultrasound imaging are available through most area hospitals. “That can be done the same day as the office visit,” Brown said. “For a lot of patients, the time factor is a big thing for them. They don’t want to wait to know.” Pathology reports on the biopsy tissue only take a few days. Again, each imaging modality has its own advantages and disadvantages when it comes to image-guided biopsies. It really depends on how well the lesion can be seen. “Biopsy under MRI is cumbersome,” radiologist Dr. Kristy Wolfel said at Conemaugh East Hills. “If we can see it under ultrasound, that’s the best way to do the biopsy. Certain cancers you can only see

under 3D mammography.”

‘Newest’ technology The Windber and East Hills centers, along with UPMC Altoona’s Station Medical Center, have introduced new tomography-guided biopsy systems. The Altoona system allows the patient to be seated during the procedure instead of lying down. “That’s our newest machine,” imaging supervisor Grace Beere said. “With other machines, you are lying down on your stomach, holding one arm overhead. For older patients, that can be quite uncomfortable being in that position for any period of time. It’s not a natural position.” Windber’s new Brevera system can save about 10 minutes per procedure with real-time imaging for instant verification and automated post-biopsy

information. Atypical tissue is on the cancer spectrum – cells that can progress into cancer.” If the risk is low, the patient may choose to have it checked again in six months. The clip placed during a biopsy can help radiologists track changes in the tissue in subsequent screening mammograms. Sometimes, there is no question about the pathology. When cancer is found, the patient is referred to a surgeon, who may order additional imaging for preoperative planning. “Surgeons really like the preop MRI,” Wolfel said. “If they already have the diagnosis of cancer, a pre-op MRI assesses the other breast to make sure we don’t have involvement.” That procedure can also find additional lesions in the same breast, which can change the surgical plan, she added. “MRI looks at the breast more physiologically,” Dr. Dan Clark, breast surgeon, said at ‘Whole different look’ Indiana Regional Medical Center. “It’s a whole different look Sometimes the pathology test and gives a better look at the provides more questions, Wol- lymph nodes for preoperative fel said. Tissue is graded on a staging.” scale, based on how likely it is Randy Griffith covers health to become cancer. “I need to figure out what care for The Tribune-Democrat. I want to do with it,” Wolfel Follow him on Twitter @phosaid. “Sometimes I need more togriffer57. specimen handling, the manufacturer says. The system handles the biopsy tissue automatically, mammography technologist Mary Elko said at the Windber center. “As they take the (biopsy) sample you can see the picture come up right away,” Elko said. “If it’s OK, you are done. You don’t have to take more samples.” Only about 20 percent of biopsies turn to be cancer. “We do biopsies on a lot of things that are benign,” Wolfel said. When she takes the biopsy sample, Wolfel can place a tiny metal clip on the remaining lesion tissue to help locate the possible tumor in later imaging. “If you do preoperative chemotherapy to shrink the tumor, you can find it again,” she said. “You localize it for the surgeon.”


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Get yearly check-up

Let’s get physical Doctors recommend annual clinical exams, routine self-exams BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

Annual mammograms are just one part of recommendations for early detection of breast cancer. Women should also get annual breast exams by a medical professional, Johnstown obstetrician/gynecologist Dr. Denice Leonard said. “A physical exam is important because it’s not just lumps,” Leonard said.

Warning signs When doing a self-exam, make an appointment with your doctor if you notice: • A hard lump or knot near your underarm • Changes in the way your breasts look or feel, including thickening or prominent fullness that is different from the surrounding tissue • Dimples, puckers, bulges or ridges on the skin of your breast • A recent change in a nipple to become pushed in (inverted) instead of sticking out • Redness, warmth, swelling or pain • Itching, scales, sores or rashes • Bloody nipple discharge Source: The Mayo Clinic Other symptoms of breast cancer include discharge, changes in skin texture, swollen lymph nodes, inverted nipples, tenderness and changes in the size or shape of the breast. “Ten percent of lumps with malignancy won’t show up on a mammogram,” breast surgeon Dr. Trudi Brown said at Joyce Murtha Breast Care Center in Windber. “That’s why its so important to have a clinical exam.” Most women go to their gynecologist for an annual checkup and pap test. That’s a good opportunity to have the recommended clinical breast exam as well, Leonard said. Although some question the value of clinical exams, a 2016 study by Canadian researchers supported the contention that the hands-on approach works. “A significant number of cancers would have been missed if (clinical exam) had not been

METROCREATIVECONNECTION.COM

Patients should be aware of changes in their breasts because a woman is most likely to spot a change in her body, doctors say. performed,” the scientists concluded in an article published in “Current Oncology.” “Compared with cancers detected by mammography alone, those detected by (clinical exam) had more aggressive features,” they wrote. “Clinical breast examination is a very low-cost test that could improve the detection of breast cancer.” National organizations have moved away from recommending monthly breast self-exams, but many encourage women to be aware of any changes in their breasts. “They know the topography of their breast,” Brown said. “They know the hills and the valleys, so they can pick up subtle changes.” If a woman notices a change, she should talk to her doctor, Leonard said. “When patients do the breast exams at home, I tell them make sure to report any changes, no matter how insignificant,” Leonard said. “I always

ask patients: Have you noticed anything? Has your partner noticed anything?” Pa t i e n t s s h o u l d n o t assume the doctor will find a change during the physical exam or mammogram, she added.

“Sometimes they won’t bring it up,” Leonard said. “They think, ‘Oh my doctor is going to find it.’ ” T he May o C l i ni c w ebsite notes that many doctors encourage women to do self-exams so they understand the

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normal look and feel of their breasts. “A significant number of women report that the first sign of their breast cancer was a new breast lump they discovered on their own,” the website says. “For this reason, doctors

recommend being familiar with the normal consistency of your breasts.” Randy  Griffith  covers  health  care  for  The  Tribune-Democrat.  Follow  him  on  Twitter  @photogriffer57.


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Mastectomy or lumpectomy? Surgical decisions mean doctors serve as educators, counselors BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

It has been more than five years since actress Angelina Jolie announced she had undergone a preventive double mastectomy to decrease breast cancer risk, and area surgeons say they can still see its effects. Although researchers found there was no increase in breast cancer screenings after Jolie went public with the news in May 2013, patients have become more aware of the double-mastectomy option with reconstructive surgery. But breast surgeons Dan Clark at Indiana Regional Medical Center and Trudi Brown at Joyce Murtha Breast Care Center in Windber stress that the radical surgery is usually overkill. “After Angelina Jolie, everybody wants the double mastectomy,” Brown said. “But unless you have the BRCA gene (mutation), removing the breast does not reduce the risk of developing cancer. A lot of patients don’t understand that.” The actress said her mother had breast cancer and died of ovarian cancer at age 56 and that Jolie herself had the inher-

ited mutation in the BRCA1 gene. “She absolutely did the right thing – for her,” Clark said. “But for most breast cancers, the 25- to 30-year survival rate is the same for mastectomy or lumpectomy with radiation. That’s what women don’t understand.” Surgeons help patients understand both options, Dr. RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT Renée Arlow, breast surgeon, said at Conemaugh East Hills Dr. Patti Ann Stefanick, a Johnstown breast surgeon, said sometimes a woman diagnosed with cancer in one breast will want to have both breasts removed. outpatient center. “With lumpectomy or mastectomy, there is no difference GROWING in survival,” Arlow said. “It’s a personal choice for women. AWARENESS to “We have to make sure everybody is educated and understands the pros and cons.” 814.243.3516 (Direct)

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New technique improves breast reconstruction BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

Advances in plastic surgery have made breast reconstruction a popular option following mastectomy for breast cancer treatment. Breast surgeons at Conemaugh Memorial Medical Center, Chan Soon-Shiong Medical Center at Windber, Indiana Regional Medical Center and UPMC Altoona all work with area plastic surgeons to offer immediate reconstruction following mastectomy. The option is especially valuable for those with a strong family history of breast cancer who choose double mastectomy to prevent cancer, breast surgeon Dr. Trudi Brown said at Windber’s Joyce Murtha Breast Care Center.

“One of the benefits women like is the fat used in the graft is obtained by liposuction. It is removed from one area of the body – say the abdomen – that has an excess of fat.” DR. PAUL ROLLINS, CONEMAUGH PHYSICIANS GROUP – PLASTIC SURGERY “Those patients can be afforded risk reduction surgery such as bilateral prophylactic surgery,” Brown said. “The reconstruction that’s done these days is so much different.” Improved cosmetic results have many women choosing reconstruction over the long-term use of prostheses to restore appearance. With both surgeons in the operating room, women often have the reconstructed breasts when they wake up from anesthesia.

RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT

Dr. Paul Rollins speaks about breast reconstruction during an interview at Conemaugh Physicians Group – Plastic Surgery in the Kernville section of Johnstown on Sept. 14. A new technique that improves the long-term cosm e t i c a p p e a ra n c e o f t h e breasts is now being offered in Johnstown, Dr. Paul Rollins said at Conemaugh Physicians Group – Plastic Surgery offices in Conemaugh Medical Park in the Kernville section of Johnstown “It was investigative, but it is becoming mainstream,” Rollins said. “We can use fat grafting into areas of breast reconstruction. The purpose is to correct

for deficiencies made in the feel and contour of the breast.” Following surgery, Rollins explained, scar tissue may form around the breast implants used in reconstruction. Scar tissue formation can be accelerated in breast cancer patients who receive radiation therapy. “The purpose of fat grafting is to prevent issues related to deformity due to scar tissue,” Rollins said. The fat grafting, also called lipofilling, is done in follow-up

procedures after the reconstruction. Rollins said it may take two or three trips to the operating room to achieve a natural look. “One of the benefits women like is the fat used in the graft is obtained by liposuction,” Rollins said. “It is removed from one area of the body – say the abdomen – that has an excess of fat.” Surgeons then process the fat into liquid and inject it into the breast area to re-cre-

ate the breast. In other areas, surgeons have begun using fat grafting instead of implants to reform the breast in the operating room, but longterm results of the technique are still unknown, the Pennsylvania-based nonprofit Breastcancer.org says on its website. “In many cases, the fat injected into the breast area may be reabsorbed by the body over time and the breast may lose some volume,” the website says. “This is why some plastic sur-

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Other techniques

Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.

“You have a woman whose world is turned upside down. That’s where our job is to guide them through and educate them so they can make a more rational – rather than emotional – decision about what they want to do, not tell them what to do.”

Continued from A1 “It’s a very complex decision-making process,” Clark said. “There are two sides of treating breast cancer: The oncology side and the psychological side. “You have a woman whose world is turned upside down. That’s where our job is to guide them through and educate them so they can make a more rational – rather than emotional – decision about what they want to do, not tell them what to do.” Sometimes, a woman diagnosed with cancer in one breast will want to have both breasts removed, Johnstown breast surgeon Dr. Patti Ann Stefanick said. The problem is that insurance companies often won’t cover the additional surgery for cancer with a low chance of recurrence. But if there is a chance of the cancer coming back on the other side, many women are choosing the double-mastectomy, Stefanick said. “If there is a risk, they get both sides,” she said. “No one wants to go through this again – especially as a younger lady. Usually these patients are getting immediate reconstruction.” Lumpectomies remain common for most patients with small cancer in the early stages. New research has shown some patients over age 65 will not need radiation therapy following the breast conservation surgery, Arlow noted. Arlow gained experience in a newer technique for isolating the cancer tissue during breast conservation surgery while enrolled in fellowship training at the University of Pennsylvania.

geons initially may add more fat than you think you need.” Experts warn that breast reconstruction surgery is major surgery and all surgery has some inherent risks. Each additional reconstruction procedure also involves a trip to the operating room and general anesthesia.

DR. DAN CLARK, BREAST SURGEON AT INDIANA REGIONAL MEDICAL CENTER take,” Wolfel said. With another emerging technique, a tiny seed – about the size of small sesame seed – is placed at the site of the tumor. Depending on the manufacturer, the seed is either radioactive or a high-tech reflector, which allows the system to locate it during surgery. “It’s one of the newer things,” Wolfel said. “It’s pretty noninvasive.” Wolfel and Arlow said they did not know if Conemaugh plans to introduce the seed-planting option. After a lumpectomy or mastectomy, the breast surgeon works with the oncology team to determine if more treatment is required. “Typically, we see the patient after the surgery two or three times, and then every six months for about two years,” Brown said. The visits then become annual checkups, she said. “You actually become the primary care physician,” Brown said. “You know them. You know the family. It’s a very rewarding relationship.”

Currently at area hospitals, the cancer is located using imaging systems on the day of surgery. The radiologist then places a wire into the breast, leading to the tumor, Dr. Kristy Wolfel, radiologist, said THE ASSOCIATED PRESS at Conemaugh’s East Hills center. Randy Griffith covers health care for The Angelina Jolie attends the National Board of Review Awards Gala in New York on Jan. 9. Five years after the actress announced that “The wire has different contours as you Tribune-Democrat. Follow him on Twitter she had undergone a preventive double mastectomy to decrease breast cancer risk, area surgeons say they can still see its effects. go down to know exactly what tissue to @photogriffer57.

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Updated radiation therapy options coming to region BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

Studies have consistently shown no difference in survival rates for qualified patients who select breast-conserving surgery over mastectomies. But those who have lumpectomies normally must follow up with a round of radiation therapy treatments. Two ongoing expansion projects will improve area patients’ access the latest technology in radiation therapy. Doug MacMillan, vice president for support services, said the Conemaugh Health System is developing a radiation oncology center at Conemaugh Memorial Medical Center’s main campus. The information came out at a July meeting when Richland Township Planning Commission approved construction of a new 16,000-square-foot medical oncology center, now under construction at Conemaugh East Hills outpatient center, 1450 Scalp Ave. Meanwhile, Indiana Regional Medical Center’s partnership JOHN RUCOSKY/THE TRIBUNE-DEMOCRAT with UPMC Hillman Cancer A 16,000-square-foot medical oncology center is under construction at Conemaugh East Hills outpatient center, Center is expanding and updating radiation therapy options 1450 Scalp Ave., Richland Township.

at Indiana. “We believe that cancer care should be provided in the communities where patients live,” said Stephanie Dutton, UPMC vice president and Hillman CEO. “UPMC has had a relationship with Indiana Regional Medical Center for more than 20 years, with medical oncologists on the campus. They are interested in providing quality care in the community.” The new partnership in radiation oncology services has launched an overall expansion and modernization. “We are embarking on a fairly expansive construction/renovation project,” Dutton said. “It will expand treatment spaces and improve the patient experience. There will be a new, stateof-the-art linear accelerator for radiation treatment.” The project also includes a new positron emission tomography/computed tomography unit, which is used to precisely identify areas for radiation treatment and map the location for the accelerator’s beam. Dutton calls the PET/CT imaging system “vital in the treatment of breast cancer.” Construction is being done

in phases to continue treating patients during the expansion. Dutton said the work should wrap up in early summer. Radiation therapy is also available at UPMC Hillman Cancer Center’s John P. Murtha Pavilion at 337 Somerset St. in Johnstown. The association with UPMC He a l t h S y s t e m p r o v i d e s patients with the latest expertise and access to enrolling in clinical trials offered by the Pittsburgh network. “We have over 600 clinical trials at any time,” Dutton said, adding that not all trials are available to patients at all locations. T h e Jo h n s t o w n c e n t e r opened in 2002, and became a joint UPMC-Conemaugh program when Conemaugh acquired UPMC Lee Regional in 2005. When Conemaugh was acquired by for-profit Duke LifePoint Healthcare in 2014, its ownership share in the Somerset Street cancer center was transferred to the nonprofit 1889 Foundation. Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.

Chemotherapy ‘personalized’ through targeted treatments BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

It’s not just chemotherapy anymore. Advances in medical oncology have individualized treatments based on molecular makeup of cancer cells. “The way we treat patients is quite different compared to when I was a medical student,” medical oncologist Dr. Ibrahim Sbeitan said at Conemaugh Memorial Medical Center, 1043 Franklin St. “It is much less toxic, with much better survival.” Improvements in both the cancer drugs and those used to treat side effects have made traditional chemotherapy more tolerable, but doctors see the future in targeted treatment and immunotherapy. “We are doing a lot more with immunotherapy in breast cancer,” Conemaugh oncologist Dr. Sheetal Higbee said. “It is activating the body’s own immune system to fight the cancer. We are turning away from (traditional) chemotherapy.” “There is nothing like our own immune system to fight the cancer,” Sbeitan added. Everyone’s body produces cancer cells, Sbeitan explained. Normally the body’s immune system fights the cancer much as it fights viruses. Tumors develop because the immune system no longer recognizes the cancer, he said. “Cancer fools the immune system,” Sbeitan said. “Immunotherapy removes a shield from the cancer cells so the cancer cells are recognized as bad cells.” Targeted treatments are based on research identifying how proteins or genetic components of cancer cells function. Targeted therapy agents seek to interrupt the function and

respond, Sbeitan said. “Most people who have advanced cancer, we send the specimen for testing,” he said. “Cancer happens because there is a mutation. The goal is to find the mutation.” Much of the targeted treatment research is in the early stages. “It is still an ongoing process,” Sbeitan said. “Often, you find multiple mutations. You don’t know what is the driver mutation, and you don’t know what is the passenger mutation.” Researchers are continuing to look for molecular markers that identify cancer cell functions. “They are finding all the mutations now,” Higbee said. “They are trying to find the drivers.” A genomics test marketed as Oncotype DX has been helping identify breast cancer characteristics for more than a decade. Doctors use the test to examine 21 specific genes in the breast tumor tissue following surgery. The results can predict the response to chemotherapy and the likelihood cancer will return. “Oncotyping is another big thing with breast cancer,” breast surgeon Dr. Trudi Brown said at Joyce Murtha Breast Care Center at Chan Soon-Shiong Medical Center of Windber. “It can really change who will benefit from chemotherapy. It used to be the same treatment for everybody. Now it’s so personalized.” The advances have been game-changing, Johnstown breast surgeon Dr. Patti Ann Stefanick said. “When I started, there were three or four (chemotherapy) drugs,” Stefanick said. “If you failed them, you failed drug therapy. “Now there are more than 40 – so many different drugs and

different ways they can act upon the tumor. They are so much more effective with much fewer side effects.” The proof is in the results, breast surgeon Dr. Dan Clark said at Indiana Regional Medical Center. “We now have very targeted treatment for breast cancer,” Clark said. “We are doing the same operations I did 20 years ago, but survival has been dramatically improved.” Sbeitan said most of the chemotherapy agents of the 1990s are no longer used. “The actual changes have been dramatic,” he said. “We are trying to make cancer a chronic disease. Some patients do very well. Two-thirds can be cured, and one-third, we can significantly prolong their lives.” The next generation of genetic sequencing of cancer cells is expected to speed research and drug development, he added. Where Oncotype DX examines 21 genes, genetic sequencing systems look at thousands. The Genomic, Proteomic Spectrometry Cancer test, or GPS Cancer, was introduced in 2016 by NantHealth Inc., founded by Dr. Patrick SoonShiong, the financial backer for Chan Soon-Shiong Medical Center at Windber. The test, which is available for some patients through the Joyce Murtha center, breaks down the entire cancer genome of more than 20,000 genes. The information is compared to healthy cells to identify targets and develop the next generation of cancer drugs. “Life is very good for cancer patients,” Sbeitan said. “Progress is steady and positive. Cancer is no longer a death sentence. This is the bottom line.”


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The Cambria County Association for the Blind and Handicapped is Proud to Support Breast Cancer Awareness Month. Our 350 Staff and Employees Honor the Survivors, Victims and Families of Breast Cancer.


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New East Hills center is convenient and quick BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

Missy Felton, breast health patient navigator, calls herself the mayor of the women’s imaging center inside Conemaugh Advanced Imaging’s suite in Richland. “I don’t want anybody else doing this,” Felton said at the suite in Conemaugh East Hills outpatient center. “If a radiologist sticks a needle into somebody’s breast, I’m beside them.” Officially, Felton’s duties include patient education, explanation of tests and procedures, scheduling assistance, helping find community resources and emotional support. She relishes the opportunity to provide comfort and assistance. “I hold their hand a lot,” Felton said. “I am a professional hand-holder. It’s scary if you hear the word ‘biopsy.’ ” Patients also appreciate the convenience of having all imaging services in one central location, with a breast radiologist in the building to read diagnostic mammograms, ultrasounds and magnetic resonance images, Felton said. Breast imaging radiologist Dr. Kristy Wolfel says her patients like the quick turnaround on imaging and biopsy tests. “This is decreasing patient anxiety a significant amount, with the way we are getting them in,” Wolfel said. “If it’s positive – that’s a shock. However, the waiting is the worst, people tell me.” Together, the patient navigaJOHN RUCOSKY/THE TRIBUNE-DEMOCRAT tor and the radiologist can help The Conemaugh East Hills outpatient center in Richland Township, above, is home to Missy Felton, below, a breast the newly diagnosed patient health patient navigator. At left, Joan Quinn, a radiology technologist, prepares the mammography unit for a patient. consider the options. “They say, ‘Thank goodness there’s somebody here,’ ” Felton said. “I tell them it’s one step at a time.” Both Wolfel and Felton find reward in supporting breast cancer patients and helping them find answers. “Some radiologists, they just want to sit in a dark room and look at pictures,” Wolfel said. “I love the interaction. I know the anxiety that goes along with this, and I can help. “This is definitely my calling.” The entire staff at the East Hills Center works to help the patient, coordinating with doctors in other facilities or hospitals, Felton said. “I am there to make sure the patients get the care they need,” Felton said. “I am tenacious – some people say annoying – but I have a great working relationship with the whole team up here.” Although recognizing the serious nature of breast cancer diagnosis, Felton said she tries to help patients relax. “There is a lot of humor,” she said. “Sitting here all sober and somber doesn’t help.”

TODD BERKEY/THE TRIBUNE-DEMOCRAT

TODD BERKEY/THE TRIBUNE-DEMOCRAT

Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.

Indiana center gives hope when ‘life changes before their eyes’ BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

INDIANA – There is a special area for breast cancer patients and those facing diagnosis at Indiana Regional Medical Center. The M. Dorcas Clark, MD, Women’s Imaging Center at Indiana was designed to provide the latest services, while also offering emotional support, nurse navigator Dena Diehl said. “When they come in, they are nervous, scared and overwhelmed – not knowing what the results will be,” Diehl said. “Their life changes before their eyes.”

sy, and I’m with them through the end of the treatment,” Diehl said. Diehl also hosts a breast cancer support group that meets at 6 p.m. on the last Thursday of each month in the center’s library room. “We are able to help women who are in a very stressful time,” Diehl said. “We kind of guide them through. It’s very rewarding.” DENA DIEHL, Resources at the women’s NURSE NAVIGATOR center include digital mammography, a stereotactic unit for image-guided biopsies, Diehl connects with patients a bone-density testing unit, when they have suspicious breast ultrasound suite for mammograms. diagnostics and image-guid“I schedule them for the biop- ed biopsy, clinical breast exam

“We are able to help women who are in a very stressful time. We kind of guide them through. It’s very rewarding.”

PHOTO COURTESY OF INDIANA REGIONAL MEDICAL CENTER

The M. Dorcas Clark, MD, Women’s Imaging Center at Indiana was designed to provide the latest services, while also offering emotional support room, library and Birdie’s Closet resource center. A unique project created to offer patients supplies to help them cope with appearance-related side effects of cancer treatments, Birdie’s Closet opened in 2008. It provides a place for women

to try on and get fitted for hats, wigs, makeup, prostheses, bras and camisoles. Leaders say the goal of Birdie’s Closet is to not only provide accessories that enhance physical beauty, but also to enhance an individual’s sense of survivorship. The Closet serves as a haven

to women to ask questions and obtain information. It is supported by the hospital and Indiana Healthcare Foundation. Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.


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Joyce Murtha center grows legacy through service BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

WINDBER – The Joyce Murtha Breast Care Center in Windber opened in February 2002 as the region’s first outpatient facility dedicated to women and breast cancer. The center was inspired by the late Jeanne McKelvey, of Salix, a breast cancer patient who was frustrated with long waits, clinical environments and the need to travel from one facility to another for care. “My goal is really what is up there: One door to go through, and somebody right inside that door like at a hotel, to escort you to where you need to go for your procedure,” McKelvey said when the center opened. Although some things have changed, the Murtha center continues to provide most services required by women facing breast cancer, as well as those trying to prevent the disease. “Women can expect nothing but the best at the Joyce Murtha Breast Care Center,” the center’s website says. “They have access to the most up-todate technology in breast imaging and care providing them with the peace of mind they need when undergoing breast exams.” Advances in medicine add importance to providing a personal touch for breast cancer patients facing life-changing decisions, breast surgeon Dr. Trudi Brown said at the center. “When I started my training, breast cancer treatment was pretty cut and dried,” Brown said. “You could have lumpectomy or mastectomy. There was not a lot of thought went into that. They really did not get individualized care. “It has become a complex disease. Patients need someone to take the time to explain that to them.” Brown has joined breast surgeon Dr. Deborah Sims at the center, located at the top of Seventh Street on the campus of Chan Soon-Shiong Medical Center at Windber. Sims plans to scale back her practice to a part-time status, center Executive Director Erin Goins said.

RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT

Erin Goins (left), executive director of Joyce Murtha Breast Care Center in Windber, talks with Dr. Trudi Brown, a breast surgeon at the center, on Aug. 30. The Murtha center remains a onestop facility for breast care, offering low-dose 3D mammography, breast ultrasound, magnetic resonance imaging, minimally invasive biopsies, genetic counseling, bone densitometry and the opportunity to contribute to research studies through Chan SoonShiong Institute of Molecular Medi-

cine at Windber. The on-site biopsies are an important part of the mission, Goins said. “That can be done the same day as the office visit,” she said. “For a lot of patients, the time factor is a big thing. They don’t want to wait to know.” Windber also benefits from com-

munity support through its Pink Ribbon Care Fund. Largely supported by the Taunia Oechslin Girls Night Out Foundation, the fund provides financial help for patients, and has allowed the center to offer updated services. An advanced automated biopsy system and lymphedema early detection

system are among the recent additions. “We are able go get that because of all the support from the community,” Goins said. Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.

Altoona facility has Magee-Womens tie BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT

Sondra Hartman demonstrates an ultrasound machine at UPMC Altoona Station Medical Center, 1516 Ninth Ave., Altoona, on Sept. 17.

Somerset Hospital offers local imaging as well as links to Pittsburgh center BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

SOMERSET – Although there is no dedicated women’s imaging area at Somerset Hospital, the small-town atmosphere provides a personal touch, imaging manager Melissa Minnick said. “Because we are a small community, I feel we have that closeness with our patients,” Minnick from the hospital at 225 S. Center Ave. in Somerset Borough. Radiologists from Pittsburgh-based Foundation Radiology staff the center, working closely with Somerset’s breast surgeon, Dr. Alessia Tandin. Based at Forbes Hospital in Monroeville, Tandin sees patients every other week in the Somerset Surgical Services office in the Wheeler Building, 126 E. Church St., Somerset. The hospital imaging department is equipped to offer mammography, ultrasound and image-guided biopsies for breast cancer, Minnick said. “We just updated to 3D tomography mammograms,” Minnick said. “The statistics say with tomography, you’ll find 20 to 65 percent more invasive breast cancer, compared to 2D – which is pretty incredible.” Originally, the tomography was recommended for women with dense breast tissue. But as the

“We just updated to 3D tomography mammograms. The statistics say with tomography, you’ll find 20 to 65 percent more invasive breast cancer, compared to 2D – which is pretty incredible.” MELISSA MINNICK, SOMERSET HOSPITAL IMAGING MANAGER benefits have been recognized, all patients are able to get the 3D screenings, she said. “It reduces call-backs up to 40 percent,” Minnick said. Patients appreciate having the latest technology available at the community hospital, she said. “Anytime a patient doesn’t have to travel to Johnstown or Pittsburgh – I think all our patients see that as a benefit.” Minnick said. Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.

imaging supervisor Grace Beere said. “They have their own waiting room,” Beere said. “They can change in their own area, and we take them right in for the imaging.” Nurse navigators guide breast cancer patients through the care process, coordinating appointments and consultations. The navigators also can connect those without enough insurance with programs that cover screening and treatment costs. “If they do get called back, throughout that process, that level of anxiety increases,” Deur said “(The navigator) lets them know it’s OK that they are anxious and we are here for them.” Having radiologists at the center reduces delays in getting answers, she added. “We talk to them, so they don’t just get a letter in the mail,” Deur said. “We can answer any questions they may have.”

ALTOONA – The women’s health facility UPMC Altoona Station Medical Center provides a spectrum of imaging and diagnostic services, and something more. The 1516 Ninth Ave. outpatient center is part of t h e U P M C ’s h a l l m a r k Magee-Womens Hospital. Leaders say that means the trained medical professionals at Altoona are backed up by the nationally recognized experts at Magee. There’s even a telemedicine connection with Magee’s genetic counselor for assessing family risk of cancer. Wo m e n a p p r e c i a t e t h e convenience of getting care outside the hospital, radiologist Dr. Lauren Deur said at the center, located in a reno vat e d B i L o s u p e r m a r ke t building. “People really like it,” Deur said. “Going to the hospital has a definite psychological effect Randy Griffith covers health on you. This is much less traucare for The Tribune-Democrat. matic.” Women appreciate having Follow him on Twitter @phoa dedicated area at the center, togriffer57.


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Fight the Fight, Find a Cure!

PHOTOS BY TODD BERKEY/THE TRIBUNE-DEMOCRAT

Andrea Bandzuh (left) and Megan Stahl-Skinner laugh as they get their picture taken in the photo booth during the Taunia Oechslin Girls Night Out event on April 24.

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arty with a urpose

Taunia Oechslin Girls Night Out is shooting for $1 million mark

Proud to Support Breast Cancer Awareness Month

BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

Sometimes, insurance and funding programs won’t cover ever y breast cancer need. That’s where local fundraising efforts can fill the gap through special accounts associated with area hospitals. Many of the fundraisers are held during National Breast Cancer Awareness Month in October, but one of the biggest comes in the spring. Over the past 12 years, the annual Taunia Oechslin Girls Night Out has raised about $850,000 for the Pink Ribbon Care Fund at Joyce Murtha Breast Care Center in Windber.

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The Taunia Oechslin Girls Night Out, above, featured a pink basket raffle, live and silent auctions, an online auction, a purse room and presentations about breast cancer on April 24. At right, Pam and Donald Dudley, parents of the late Tania Oechslin, pose next to the pink ribbon balloons. At left, a “Give Cancer the Boot” fundraising prop is shown at one of the tables at the Frank J. Pasquerilla Conference Center in Johnstown. PHOTOS BY TODD BERKEY/THE TRIBUNE-DEMOCRAT

“It’s extraordinary what she started, but the women who have kept it going have made it a living memorial for who she was.” DONALD DUDLEY, FATHER OF TAUNIA OECHSLIN

GIRLS

be enlisting local businesses and locations to collect funds this month for the new Give Continued from Page 25 Breast Cancer the Boot campaign. Donors will be able to Organizers with the Taunia write their names on pink boot Oechslin Girls Night Out Foun- cutouts that will be displayed at dation hope the 13th annu- the participating locations. al event on April 16, 2019, will be the lucky event to push total ‘Care for anybody’ donations past the $1 million The Pink Ribbon Care Fund mark. T h at p u t s t he goa l at supports programs and patients $150,000. Last year’s event at the Joyce Murtha center of raised $122,000, foundation Chan Soon-Shiong Medical President Megan Stahl-Skinner Center at Windber. “That provides care for anysaid. “It would be more than we body who can’t pay for breast ever raised, so we are starting in cancer care,” center Director Erin Goins said. October,” Stahl-Skinner said. Services include screenFoundation volunteers will

ing mammograms, diagnostic imaging, biopsies and office visits. “The biggest thing we use it for is genetic testing,” Goins said. “A lot of insurance won’t pay for genetic testing.” Testing is indicated for women with a strong family history of breast or ovarian cancer, and for those who are diagnosed with breast cancer before age 50. Those who are shown to have a significant lifetime risk of more cancer can take further action, including preventive mastectomies and removal of ovaries. Girls Night Out donations come with few strings attached, Stahl-Skinner said.

“Our only stipulation from the foundation is that it is used for patient care, up-to-date technology and to build awareness,” Stahl-Skinner said.

‘What she started’ Girls Night Out began as a small “pay it forward” project by Taunia Oechslin, a breast cancer fighter who was diagnosed at 36 years old. She died on April 9, 2009, at the age of 39. Genetic testing is an ideal service for the foundation to support, Stahl-Skinner said, noting that Oechslin carried a gene mutation that put her at higher risk for breast cancer. “Taunia was BRCA positive,” Stahl-Skinner said. “That was back in the dinosaur days, when testing cost thousands of dollars.” Oechslin wanted to see that every woman is educated about breast cancer and has access to the best screenings and treatments. The 2018 event was held at Frank J. Pasquerilla Conference Center in Downtown Johnstown, featuring dinner, a pink basket raffle, live and silent auctions, an online auction, a purse room and presentations about breast cancer. Oechslin’s father, Donald Dudley, said the foundation’s success is a wonderful legacy. “It’s extraordinary what she started, but the women who have kept it going have made it a living memorial for who she was,” Dudley said at the 2018 Girls Night Out. “It’s also a way for women in this community to support one another in the needs for breast cancer screening and genetic profiling, particularly for women with financial needs or those whose insurance needs are lacking.” Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.

Financial support available for breast cancer screening The Komen mammogram voucher program has no income, gender or age restricA state program fundtions. ed by the Centers for DisIt covers screening mamease Control and Prevention mograms and diagnostic and a national mammogram services – including breast voucher program by Susan ultrasounds, diagnostic mamG. Komen help pay for breast mograms and breast biopcancer screenings and treatsies – along with patient navment across Pennsylvania. igation help, follow-up care The HealthyWoman Proand referral services. gram is a free breast and cerBoth the HealthyWoman vical cancer early detection Program and mammogram program of the Pennsylvania voucher program are adminDepartment of Health. It is istered in Western Pennsylvafunded, in part, by a grant the nia by Adagio Health of Pittsdepartment receives from the burgh. • To learn more about the CDC. HealthyWoman Program, Services include clinical breast exams, mammograms, visit www.adagiohealth.org/ cancer-screening-programs; pelvic exams and pap tests and follow-up diagnostic tests or call 800-215-7494. • Information about the after abnormal screenings. Komen-funded mammogram Eligibility is based on voucher program is available income and family size. The Susan G. Komen mam- at the same website; or by calling 888-687-0505. mogram voucher program provides screening mammoRandy Griffith covers grams and breast diagnostic health care for The Triservices for uninsured and bune-Democrat. Follow him underinsured women and on Twitter @photogriffer57. men. BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM


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Advances help address lymphedema BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

RANDY GRIFFITH/THE TRIBUNE-DEMOCRAT

Mary Elko (left), mammography technologist, talks with Dr. Trudi Brown (second from left), breast surgeon; Kim Knapp (second from right), research nurse; and Tess Kostan, nurse, at Joyce Murtha Breast Care Center of Chan Soon-Shiong Medical Center at Windber on Aug. 30.

Genetic jumble

Family history is just one risk factor for breast cancer BY RANDY GRIFFITH RGRIFFITH@TRIBDEM.COM

Women with two or more close relatives diagnosed with breast cancer before age 50 may have an inherited gene mutation that gives them a 70 percent chance of developing cancer. Those women can contact breast cancer programs at several of the region’s hospitals to find out more about their risk. Genetic counselors will be able to help determine if they are eligible for genetic testing for the BRCA1 or BRCA2 gene mutations. BRCA is shorthand for breast cancer, but the mutations are also associated with an increased risk of other cancers. Kimberly Knapp is a clinical nurse and trained genetic counselor at Joyce Murtha Breast Care Center of Chan Soon-Shiong Medical Center at Windber. She says genetic testing has expanded to include dozens of known risk fac-

“Most patients have no family history of breast cancer.” DR. DAN CLARK, INDIANA REGIONAL MEDICAL CENTER tors for various types of cancer. For those with a strong family history, genetic testing can allow them to take extra precautions against breast cancer, Knapp said. Although the BRCA gene mutations are most recognized, researchers continually find more genetic links. Windber offers a genetic screening for a panel of almost 50 different mutations, Knapp said “We are increasingly finding patients with other mutations,” she said. “They are reclassifying other mutations as risks, too.” So the fact that someone tested negative for the BRCA genes doesn’t mean they don’t carry an inherited risk factor.

not at risk. “Most patients have no family history of breast cancer,” Clark said. T h e Pe n n s y l v a n i a - b a s e d non-profit Breastcancer.org estimates that 75 percent of breast cancer patients have no significant family history of the disease. Family history is just one risk factor for breast cancer. Others include getting older, benign breast problems, early exposure to ionizing radiation, having children late in life or not at all, having dense breasts, longer exposure to estrogen and progesterone, obesity, lack of exercise and drinking alcohol. But about half of all breast cancer patients have no risk factors at all, so it’s important to follow doctors’ recommendations for screening mammograms, clinical exams and other early detection measures, the experts say.

Knapp has begun contacting patients who had negative BRCA tests before 2012 to let them know that today’s screenings test for more risk factors, and to see if they want the updated screening. While advocates raise awareness of the benefits of genetic testing, they say it is important not to overemphasize the genetic link. No more than 10 percent of breast cancer is thought to be caused by abnormal genes passed down through families, Dr. Dan Clark, breast surgeon, said at Indiana Regional Medical Center. Clark fears heightened attenRandy Griffith covers health care tion on the genetic risk may cause women with no breast cancer in for The Tribune-Democrat. Follow their families to think they are him on Twitter @photogriffer57.

Advances in breast cancer treatment that allow for less invasive surgical procedures have also reduced the risk of a once-common, painful complication from breast surgery. Lymphedema is often related to surgical removal of lymph nodes during breast surgery for staging purposes. Doctors check the lymph nodes for signs the cancer has spread from the breast. Lymph nodes are bean-sized glands in the lymphatic system, which transports protein-rich fluid throughout the body. When the system is interrupted, lymph fluid can accumulate, causing swelling in one or more parts of the body. In the past, surgeons removed a dozen or more lymph nodes in the armpit area to check for cancer, Dr. Trudi Brown, breast surgeon, said at Joyce Murtha Breast Care Center in Windber. “It’s for staging, to identify if the tumor has gone into the lymphatic system,” she said. Now doctors can identify the first lymph nodes that drain the breasts, and just remove a few sentinel nodes, she said. “It’s like taking the grapes off the vine, rather than ripping the vine out of the soil,” breast surgeon Dr. Dan Clark said at Indiana Regional Medical Center. For patients who develop lymphedema, the region’s hospitals have treatment programs that include specially trained therapists. Therapy includes massage, skin care, multi-layer bandaging and home exercises. Patients are often fitted for special compression garments, such as sleeves or socks, to reduce fluid accumulation. In addition to Conemaugh’s flagship Memorial Medical Center in Johnstown, there is now lymphedema help at Conemaugh Meyersdale Medical Center. The lymphedema service began in May through the Meyersdale center’s rehabilitation services department. Chellie Hurt, an occupational therapist and certified lymphedema therapist, is providing the service. At Windber, a device measures the amount of fluid collecting in limbs. The L-Dex measuring system, developed by ImpediMed Inc., can detect a difference of just two tablespoons of fluid, nurse Tess Kostan said at the Windber center. When the L-Dex shows significant fluid levels, the patient can be referred to Windber’s lymphedema therapist, Elizabeth Pile-Hunsberger. Treatment is effective and usually allows patients to resume daily activities without pain, the therapists say. Randy Griffith covers health care for The Tribune-Democrat. Follow him on Twitter @photogriffer57.

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Doctors’ dilemma

For cancer patients in nursing homes, surgery may do more harm than good BY LIZ SZABO

KAISER HEALTH NEWS

Surgery is a mainstay of breast cancer treatment, offering most women a good chance of cure. For frail nursing home residents, however, breast cancer surgery can harm their health and even hasten death, accord-

ing to a study published in JAMA Surgery. The results have led some e xper ts to ques tion why patients who are fragile and advanced in years are screened for breast cancer, let alone given aggressive treatment. The study examined the records of nearly 6,000 nurs-

ing home residents who had inpatient breast cancer surgery the past decade. It found that 31 percent to 42 percent died within a year of the procedure. That’s significantly higher than the 25 percent of nursing home residents who die in a typical year, said Dr. Victoria Tang, lead author and an assis-

tant professor of geriatrics and hospital medicine at the University of California-San Francisco. Although her study doesn’t include information about the cause of death, Tang said she suspects that many of the women died of underlying health problems or complications related to surgery, which can further weaken older patients. Patients who were the least able to take care of themselves before surgery, for example, were the most likely to die within the following year. Dementia also increased the risk of death. It’s unlikely that many of the deaths were due to breast cancer, which often grows slowly in the elderly, Tang said. Breast cancers often take a decade to turn fatal. “When someone gets breast cancer in a nursing home, it’s very unlikely to kill them,” said study co-author Dr. Laura Esserman, director of the UCSF breast cancer center. “They are more likely to die from their underlying condition.” Yet most patients in the study got sicker and less independent in the year following breast surgery. Among patients who survived at least one year, 58 percent suffered a serious downturn in their ability to perform “activities of daily living,” such as dressing, bathing, eating, using the bathroom or walking across the room. Women in the study, who were on average 82 years old, suffered from a variety of life-threatening health problems even before being diagnosed with breast cancer. About 57 percent suffered from cognitive decline, 36 percent had diabetes, 22 percent had heart failure, 17 percent had chronic lung disease and 12 percent had survived a heart attack. The high mortality rate in the study is striking because breast surgery is typically considered a low-risk procedure, said Dr. Deborah Korenstein, chief of general internal medicine at New York’s Memorial Sloan Kettering Cancer Center. The paper provided an example of how sick, elderly people can suffer from surgery. An 89-year-old woman with dementia who underwent a mastectomy became confused after surgery and pulled off all her bandages. Health care workers had to restrain her in bed to prevent her from pulling off the bandages again. The woman died 15 months later of a heart attack. Surgery late in life is more common than many realize. O n e - t h i r d o f Me d i c a r e patients undergo surgery in the year before they die, according to a 2011 study in The Lancet. Eighteen percent of Medicare patients have surgery in their

METROCREATIVECONNECTION.COM

Nearly 1 in 5 women with severe cognitive impairment, such as Alzheimer’s disease, get regular mammograms, according to a study in the American Journal of Public Health. final month of life and 8 percent in their final week. Nearly 1 in 5 women with severe cognitive impairment, such as Alzheimer’s disease, get regular mammograms, according to a study in the American Journal of Public Health. The new study leaves some important questions unanswered. The paper didn’t include healthier nursing home residents who are strong enough to undergo outpatient surgery, said Dr. Heather Neuman, a surgeon and associate professor at the University of Wisconsin School of Medicine and Public Health. These women may fare better than those who are very ill. Esserman and Tang said their findings suggest doctors need to treat breast cancer differently in very frail patients. “People think, ‘Oh, a lumpectomy is nothing,’ ” Esserman said. “But it’s not nothing in someone who is old and frail.” In recent years, doctors have tried to scale back breast cancer therapy to help women avoid serious side effects. In June, for example, researchers announced that sophisticated genetic tests can help predict which breast cancers are less aggressive, a finding that could allow 70 percent of patients to avoid chemotherapy. The Medicare database used in this study didn’t mention whether any of the patients had chemotherapy, radiation or other outpatient care. So the UCSF researchers acknowledged that they can’t rule out the possibility that some of the

women suffered complications due to these other therapies. In general, however, authors noted that only 6 percent of nursing home residents with cancer are treated with chemotherapy or radiation. The authors said doctors should give very frail patients the option of undergoing less aggressive therapy, such as hormonal treatments. In other cases, doctors could offer to simply treat symptoms as they appear. The new study raises questions about the value of screening nursing home residents for breast cancer, Korenstein said. Although the American Cancer Society hasn’t set an upper age limit for breast cancer screening, it advises women to be screened as long as they’re in good health and expected to live at least another decade. Residents of nursing homes generally can’t expect to live long enough to benefit from breast screening, Korenstein said. “It makes no sense to screen people in nursing homes,” Korenstein said. “The harms of doing anything about what you find are far going to outweigh the benefits.” KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation. Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.


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Missing the mark Often touted for cancer, ‘precision medicine’ is sometimes off target BY LIZ SZABO,

KAISER HEALTH NEWS

Facing incurable breast cancer at age 55, MaryAnne DiCanto put her faith in “precision medicine” – in which doctors try to match patients with drugs that target the genetic mutations in their tumors. She underwent repeated biopsies to identify therapies that might help. “She believed in it wholeheartedly,” said her husband, Scott Primiano, a flood insurance broker in Amityville, New York. “You live on hope for so long, it’s hard to let go.” Around this point in the average news story, readers would learn how DiCanto – mother to a blended family of five – took a chance on an experimental drug that no one expected to work. She would be the scrappy protagonist whose determination to “keep fighting” enabled her to beat the odds – allowing us to celebrate the triumph of modern science and worry a bit less about our own mortality. But there’s a serious problem with talking about precision medicine for cancer this way. It misleads the public. In spite of DiCanto’s high hopes, none of it helped. DiCanto died last year at age 59. Doctors and hospitals love to talk about the patients they’ve saved with precision medicine, and r e p o r t ers love to write about them. But the people who die – p a t i e n t s Wagle such as DiCanto, who succumb to cancer despite the advanced testing – still vastly outnumber the rare successes. “There are very few instances in which we can look at a genomic test and pick a drug off the shelf and say, ‘That will work,’ ” said Dr. Nikhil Wagle, a cancer specialist at Boston’s Dana-Farber Cancer Institute who helped develop precision-medicine tests. “That’s our goal in the long run, but in 2018 we’re not there yet.” Reflecting on his family’s experience with “precision” treatment, Primiano said, “You think it’s going to be more precise, like a laser versus a shotgun. But it’s still a shotgun.” There has been real progress, of course. Testing for genetic mutations has become the standard of care in lung cancer, melanoma and a handful of other tumor types. But the number of people with advanced cancer eligible for these approaches is just 9 percent to 15 percent, experts estimate. These targeted therapies help about half of patients who try them, said Dr. Vinay Prasad, an associate professor at Oregon Health and Science University. Targeted therapies tend to be less successful in patients such

“You think (precision medicine is) going to be more precise, like a laser versus a shotgun. But it’s still a shotgun.” SCOTT PRIMIANO, WIDOWER WHOSE WIFE DIED OF BREAST CANCER as DiCanto, who have exhausted all standard treatments. In a large study published last year in Cancer Discovery, precision medicine failed to help 93 percent of the 1,000 patients who signed up for the study. At the most recent meeting of the American Society of Clinical Oncology – the largest cancer meeting in the world – researchers presented four precision-medicine studies. Two were total failures. The other two weren’t much better, failing to shrink tumors 92 percent and 95 percent of the time. The studies received almost no news coverage. Some experts, including Dr. David Hyman of New York’s Memorial Sloan Kettering Cancer Center, say that such testing should be available to everyone with advanced cancer, because no one can predict which individual might have a rare mutation that can be targeted with a new or experimental drug. When patients respond to these drugs, they tend to do very well, and some survive much longer than expected. But Hyman acknowledged that many people who pursue precision medicine will be disappointed, because testing won’t lead to a new treatment. Precision medicine “is Hyman not addressing the needs of the majority of cancer patients,” he said. Many doctors interview were uncomfortable talking about patients who didn’t survive. While acknowledging that not all patients are helped by tumor sequencing, they quickly pivot to talking about people they’ve saved. They rush past the disappointing present and fast-forward to a future in which every patient gets the treatment she or he needs. If you don’t listen carefully, you could easily be led to believe those future cures are already here. Hospitals promote their precision-medicine programs by showcasing the stories of longterm survivors. Companies such as Foundation Medicine, Caris Life Sciences and Guardant Health – which sell the tests that look for cancer mutations – highlight only the best-case scenarios on their websites. In drug company marketing, patients are cheerleaders for the latest treatment fad. Against this backdrop of hope and desperation, how are patients supposed to make informed decisions? DiCanto gave precision medicine everything she had, including biopsies from her lungs and liver, where her cancer had

spread. Over 2½ years, her doctor sent seven blood and tissue samples to specialized labs for “next-generation sequencing,” which can quickly scan hundreds of genes. The tests aim to locate a cancer’s Achilles’ heel – a genetic vulnerability that can be targeted with a drug. D i C a n t o’s fi r s t ge n o m ic test matched her to a newly approved drug she would have tried anyway, Primiano said. When it stopped working, she had another biopsy. That time, tests matched her to a different drug approved for breast cancer. But it proved so toxic that it “nearly killed her,” Primiano said. Additional tests matched DiCanto to drugs available only in clinical trials. Eligibility criteria for clinical trials are notoriously strict, however, and often exclude people who’ve been heavily treated with other medications. DiCanto wasn’t eligible for any of them. Even when patients are eligible for trials, many turn them down. They’re just too frail and sick to travel to the metropolitan areas where most trials are run. Although DiCanto benefited from standard cancer treatments, none of the targeted therapies recommended through genetic testing extended her life, Primiano said. “She didn’t give up,” Primiano said. “Her body gave up. Her body just couldn’t take it anymore.” Primiano said patients should remember that precision medicine is in its infancy. Although scientists have identified tens of thousands of genetic “variations” – changes from normal DNA that could play a role in cancer – doctors have only a few dozen drugs with which to target them. In the majority of cases, genetic mutations are of “unknown significance”; they’re essentially useless, because scientists don’t know if they affect how patients respond to drugs. Even when drugs are a good match for a specific mutation, they don’t always work. A targeted therapy that works in melanoma, for example, doesn’t help people with colorectal cancer – even when patients have the exact same mutation, said Wagle, a member of the medical advisory board for Living Beyond Breast Cancer, a patient advocacy group in which DiCanto was active. Paying for tests and treatment poses its own hurdles. Insurers often tell patients that next-generation sequencing is unproven. Even when insurers agree to cover the testing, they won’t necessarily cover nonstandard or experimental treatments that sequencing companies recommend. Primiano, a insurance broker, said his family was able to handle the costs: $500,000 out-ofpocket on his wife’s cancer care over 13 years. But managing his

wife’s cancer “was a full-time job – doing the research, finding the clinical trials, dealing with the insurance companies, managing the money.” He worries about people with fewer resources, especially patients tempted to drain their savings account to pay for a treatment with little to no chance of working.

The very words “precision medicine” suggest a high rate of success, Primiano said. While its successes should be celebrated, its failures must be acknowledged and tallied, reminding us how much is left to learn. When patients and their families have so much on the line, they deserve to understand what they’re paying for.

“Let’s not pretend this is something it isn’t,” Primiano said. “I’m not saying we shouldn’t try it. I just don’t want people to have false hope.” KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation. Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.


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