Frontline Summer 2021

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frontline

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2021, Volume 3

A Victory T for Breast Cancer Research: Senate Bill 445 Passes Unanimously!

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Senator Bob Mensch

ou made it happen! The Pennsylvania House and Senate passed our breast cancer research legislation, Senate Bill 445, unanimously! The bill, introduced by Senator Bob Mensch, allows Pennsylvanians to donate $5 toward breast cancer research on their driver’s license and vehicle registration online renewals. Research is the key to new treatments and an ultimate cure for breast cancer. Senate Bill 445 will bring us closer to that cure by supporting scientists right here in Pennsylvania. The PBCC wishes to thank all state lawmakers for supporting this important legislation! Thank YOU, our network of strength for your dedication and outreach! Together we can find a cure for breast cancer now... T so our daughters don’t have to. More photos on page 7

Advocates, survivors and PBCC board members met with Sen. Bob Mensch to discuss the impact of SB445 for women and families in PA Survivors Rep. Sue Helm and Rep. Pam DeLissio celebrate the House passage of SB445 with Rep. Karen Boback and Rep. Meghan Schroeder


A MESSAGE FROM OUR PRESIDENT

Dear friend s,

445, which enables What YOU did is remarkable. Senate Bill arch on their driver’s Pennsylvanians to donate to breast cancer rese , will make a difference license or vehicle registration online renewals ed both the Pennsylvania for generations to come. The legislation pass r calls, emails and visits. Senate and House unanimously - thanks to you to contribute even more funding toward our With this legislation, the PBCC will be able ... so our daughters don’t have to. The only mission of finding a cure for breast cancer now porting research. This bill does that and YOU way to find a cure for breast cancer is by sup made it happen! ator Bob Mensch and for the support of our I am so very grateful for the leadership of Sen the desperate need for this funding and its state lawmakers. Thank you for recognizing Take action. Save lives! impact on the women and families we serve.

Warmest regards,

Pat

New Board Members Susan Domchek, MD is a medical oncologist and a nationally recognized expert in

the translation of genetic testing for cancer susceptibility into clinical care of patients in the areas of prevention, early detection, and cancer treatment. Dr. Domchek is Executive Director of the Penn Medicine Basser Center for BRCA and Director of the MacDonald Cancer Risk Evaluation Center at the Abramson Cancer Center. Her research focuses on novel strategies to improve uptake of genetic testing, further understanding specific risks associated with cancer susceptibility genes, and developing more effective therapies for BRCA1/2 mutation associated cancers.

Shannon Dawson, senior associate for Wojdak Government Relations, brings over

15 years in government and legislative experience to the PBCC Board. She started her career in Harrisburg working in the executive offices at the Department of Agriculture and then worked for three years in the Governor’s office of Edward G. Rendell, including a stint serving as the assistant to the governor’s Chief of Staff. Shannon’s expertise has been instrumental in the passage of our breast cancer research legislation, Senate Bill 445. She continues to work with the PBCC Board and Staff to ensure that the PA Breast Cancer Coalition has a voice in Harrisburg and beyond.


Thriver Spotlight

TRISHA LANE YO R K C O U N T Y

You were told you did not have breast cancer and you had to be an advocate for yourself to be screened... TRISHA: When I first started not feeling well, I brushed it off thinking it was about having a six-month old baby and two other children to care for. When I found a lump in my left breast, I assumed it was a clogged milk duct. Given a family history of cancer though, I thought it should be checked out and made an appointment with my doctor. She was dismissive and reassured me that it was a clogged milk duct and that it would resolve itself after breastfeeding. When I went back a year later the lump had become much bigger. The doctor I saw previously had left the practice and the new physician ordered screenings, followed by a biopsy, which confirmed breast cancer. I was told that, with chemo and a double mastectomy, I would live a long healthy life, which seemed like a small price to pay. With every test that followed though, I was staged higher and higher. Bone scans confirmed stage 4 cancer. What is the most important thing you want other women to learn from your experience? TRISHA: I went in to appointments twice, and twice I heard that I was too young for it to be cancer. I was 31 years old. Also, it does happen during pregnancy. In fact, my pregnancy fueled the cancer because I was estrogen positive.

People don’t always understand the difference between metastatic and other breast cancers. I would not even label us as survivors. We are the thriving community.

“Cancer has put into perspective who I want to be as a person and what I want for my children.”

What did you learn about yourself? TRISHA: I learned that you will find strength even in your weaknesses. Cancer has put into perspective who I want to be as a person and what I want for my children. I have a 14-year-old son, a 9-year-old son, and a 2-yearold daughter. I am living life day by day and I strive to live fully but I also have accepted that there are some days when I just want to rest. What is the focus of your advocacy? TRISHA: People don’t always understand the difference between metastatic and other breast cancers. I would not even label us as survivors. We are the thriving community. I allowed it to remain in my body based on what I was told and now I live with a terminal disease. It’s one of the hardest things to think about because I could have been diagnosed when my cancer was still treatable. Tell us about your connection with the PBCC. TRISHA: My goal was to set up some sort of awareness campaign to let patients know that they can ask for screenings themselves when they feel they need more. I reached out to my State Representative Seth Grove to see if he would work hand-in-hand with me. He was very receptive. As it turns out, his wife was diagnosed at stage 3, after she was also told she had clogged milk ducts, so he knew firsthand how I felt. The difference was that, unlike me, she is a pharmacist and part of the medical community and knew she could demand further screenings. Rep. Grove is looking into legislative avenues for younger women when they are presenting with a lump, regardless of age and regardless of being post-partum. He recommended I contact the PBCC to see how we could work together. Everyone I’ve spoken with at the PBCC has been a shoulder to lean on and an ear to listen. I felt welcomed by all of the staff and I feel as though they care about the women they are speaking with. I just received my Friends Like Me care package and it is wonderful! I am so excited about the eyelashes!


Highmark Walk for a Healthy Community

GRASSROOTS

PARTNERS

Breast Friends Walking (top) hit the road in extra fancy head gear for this year’s Highmark Walk for a Healthy Community. Team Captain Marilyn Fuller-Smith led the team to raise nearly $3,000! Individual walker Nancy Harris (right) made it a family affair and surpassed her goal of over $650! Way to go, Nancy! PBCC teams crushed the ‘21 goal and contributed over $8,000 for the Friends Like Me care package program! Thank you, walkers and donors!

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Thank you, Ride 4 Life! 10 years as a GP!

1. Faulkner Subaru Golf Challenge - TBD

Golfers will be on the green all summer - Stay tuned!

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2. Lebanon County Career and Tech - $500 3. Tanger Outlets Hershey - $1,319 4. Ride 4 Life - $3,000


UPCOMING

Turn the fountain pink with us Tuesday, October 5!

EV ENTS WEDNESDAY

JULY 14

Ask the Experts LIVE Q&A: Exercise and Breast Cancer presented virtually by Kathryn Schmitz, PhD - Penn State Health >> Register now at pbcc.me/asktheexperts

11:00 AM

SUNDAY

AUG. 1

Jeeps, Jams 4 Jugs John Wright Field - Wrightsville, PA >> Learn more at pbcc.me/jeepsjams

TUESDAY

OCT. 5

PBCC Turns the State Capitol Fountain PINK! State Capitol East Wing Fountain - Harrisburg, PA >> Learn more at pbcc.me/pinkfountain

FRIDAY

OCT. 15

9:00 AM

PBCC Virtual Conference FREE registration for healthcare heroes and free continuing education credits for nurses! >> Register now at pbcc.me/conference

SATURDAY

OCT. 16

11:00 AM

Westmoreland Pink Ribbon Walk Twin Lakes Park - Latrobe, PA >> Learn more at westmorelandwalks.org


MEDICAL NEWS Contrast-Enhanced Mammography: The Next Big Advance? Wendie Berg, MD, PhD, FACR

Professor of Radiology, Magee-Womens Hospital of UPMC

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ll women deserve the opportunity for early detection of breast cancer. With standard mammography, we detect about 5 cancers per 1000 women screened. Even though 3D mammography (tomosynthesis) detects an additional 1 or 2 cancers per 1,000, cancers can still be missed, due to masking by dense tissue. About 43% of all women undergoing mammography have dense breasts, more in younger women and decreasing to about 25% of women after menopause. We also miss cancers in women who have been treated for breast cancer, possibly in part due to distracting scarring.

facilities offering this option often directly bill the patient. A new state law passed in June 2020 through efforts of the PA Breast Cancer Coalition requires insurance companies to cover supplemental screening with either MRI or ultrasound (subject to copay/deductible) for women with extremely dense breasts and/or other high-risk conditions.

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A new approach uses IV contrast to improve mammography: “contrast-enhanced mammography” (CEM). Iodinated contrast, as used in CT scans, is injected into an arm vein. The contrast makes one feel warm all over, but this passes quickly. After 2-3 minutes, a set of I have devoted my career to validating mammogram images is performed methods to improve breast cancer using standard positioning (including screening and informing patients and Early studies suggest the compression). In each position, a their healthcare providers of options. results from contrast-enhanced “low-energy” mammogram image is In the American College of Radiology which is very similar looking to mammography (CEM) are very taken Imaging Network (ACRIN) 6666 study, a standard digital mammogram. A we showed that adding ultrasound to similar to MRI though perhaps “high-energy” image is also obtained mammography in women with dense with even less added testing for which is mostly absorbed only where breasts increased cancer detection by there is iodine (from the contrast). A findings that are not cancer.” about 3 per 1000 and these were mostly “subtracted” image is created which invasive breast cancers (the ones that displays only the areas where there is can spread to nodes and beyond). This contrast enhancement (Figure). Early benefit was maintained each year. With studies suggest the results from CEM ultrasound, there were also many false positives, and each are very similar to MRI though perhaps with even less added year, about 2-5% of women having screening ultrasound testing for findings that are not cancer. may have a biopsy for a benign finding. MRI was much better at finding additional cancers, with a yield of 15/1000. Several research studies of screening CEM are ongoing at the University of Pittsburgh School of Medicine/UPMC. We Unfortunately, we found that only just over half of women are recruiting over 1600 women with a personal history of offered MRI at no charge would choose to have the MRI, breast cancer to have CEM at the time of their annual 3D due to issues including claustrophobia, pacemaker or mammogram for at least two (and hopefully three) years in other metallic implant, allergy to gadolinium contrast, the TOCEM study funded by the Breast Cancer Research and potential downstream costs from added testing and Foundation. We are recruiting 600 women to the Screening biopsies. There is also a shortage of MRI equipment CEM as an alternative to MRI “SCEMAM” study funded by nationally. “Abbreviated” MRI uses fewer sequences and the PA Breast Cancer Coalition. Women who meet criteria takes less time to perform, and thereby should improve for supplemental screening MRI are eligible. The cancers access and reduce cost. Abbreviated MRI has been we are finding with CEM are small, easily treated cancers. validated but billing/insurance issues are unclear: the few CEM is not limited by breast density.

Invasive ductal cancer is not seen on standard mammogram in this 57-year-old woman (left), is very subtle on a 3D mammogram (middle, arrow, distortion), but is easily seen on contrast-enhanced mammogram (right, red circle). If you would like to participate in the research, email TOCEMstudy@upmc.edu

Source: Dr. Wendie Berg


Senate Bill 445

Our breast cancer research legislation passed both the PA Senate and House unanimously! Scan the code above to find out what this bill means to PA researchers.

PA senators wore pink in support of SB445 and survivors on the Senate floor. Pictured below are Sen. Katie Muth (D-Berks), Sen. Judy Schwank (D-Berks), Sen. Camera Bartolotta (R-Washington), Sen. Kim Ward (R-Westmoreland) Sen. Kristin Phillips-Hill (R-York) and Sen. Lisa Boscola (D-Lehigh).

PBCC President Pat HalpinMurphy shares appreciation to Rep. Mindy Fee (R-Lancaster), Rep. Todd Stephens (R-Montgomery), Rep. Tim Hennessey (Chair, R-Chester) and Rep. Mike Carroll (Minority Chair, D-Lackawanna) for their support of SB445 in the House Transportation Committee.

Pennsylvania Senate Majority Leader Kim Ward, who recently announced her own diagnosis with breast cancer, joined PBCC President Pat Halpin-Murphy to discuss Senate Bill 445 and its impact on survivors and families in districts across Pennsylvania.

IN THE NEWS

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he PA Breast Cancer Coalition’s patient advocacy is featured in a Philadelphia Inquirer article, which tells the story of a breast cancer survivor facing a difficult insurance situation. Marianne Sarcich was being denied insurance coverage of a follow-up surgery related to her breast cancer reconstruction. The Coalition‘s Breast and Reconstructive Surgery Act of 1997 required insurers to cover reconstructive surgery and procedures related to symmetry. On her third appeal of the insurance company’s denial, Marianne asked the PBCC to write a letter to support her appeal. We did and she WON! To read the complete article, visit pbcc.me/inquirer

To request a patient advocacy call, visit pbcc.me/requestassistance


2397 Quentin Road, Suite B, Lebanon, PA 17042 800-377-8828 PABreastCancer.org

Join us!

PA BREAST CANCER COALITION

Virtual Conference Friday, October 15

Register now @ pbcc.me/conference