thinkpink Breast Cancer Awareness Month
SUNDAY, OCTOBER 6, 2013
Local breast cancer survivors share their stories of getting through the struggle of their lives, Page 6
MAKING STRIDES WALK| 2 ● EVENTS CALENDAR | 3 ● PREGNANCY AND CANCER | 4 KNOW YOUR RISK | 8 ● NEW DRUG OPTIONS | 10 ● SCREENING ADVANCES | 11
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INDEX A calendar of area breast cancer awareness events, Page 3 Pre-chemo options help women who want to get pregnant, Page 4 Local residents tell about their stories of survival, Page 6 Genetic testing a way to know your risk, Page 8 Two drugs pose some risk for women, Page 10 3-D biopsies offer hope in fight against breast cancer, Page 11 Contributing writers: Kristine Crane, Rick Allen, Andrea Carroz, Meghan Pryce, Jenny Goodson, Linda Humphrey, Charles Lawrence and Susan Smiley-Height Photographers: Erica Brough, Brad McClenney, Doug Finger, Bruce Ackerman, Cyndi Chambers, Lisa Crigar Design/Layout: Sharon Sullivan Editors: Susan SmileyHeight and Lillian GuevaraCastro ON THE COVER: Sangi Blair, Academy Coordinator for the College of Central Florida’s Criminal Justice Department and the wife of Marion County Sheriff Chris Blair, is a breast cancer survivor. Cover photo by Bruce Ackerman/Staff Photographer. Design by Rob Mack/Staff.
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Thousands plan to be Making Strides American Cancer Society fundraiser planned for Oct. 19 at CF By Linda S. Humphrey Correspondent
enee Oswell will never have another bad hair day. After losing her locks during breast cancer treatments in 2009, Oswell now applauds every strand of hair on her head and, regardless of how it looks, she smiles and feels grateful. Now, Oswell, 47, makes it a point in her life to do whatever possible to help others in their battle against cancer. Every October since 2009, she has served as a team leader for the Making Strides against Breast Cancer fundraising walk. This year’s event will be held Oct. 19 at the College of Central Florida, 3001 SW College Road, Ocala. Registration opens at 7 a.m. Walking begins at 8:30 a.m. All ages are welcome to participate. “Making Strides against Breast Cancer unites us to walk together as the most powerful force to end breast cancer,” said Morgan Brantley, a community representative with the American Cancer Society. “When you join Making Strides, you are supporting the world’s leader in the fight. The money you raise helps the ACS do the most for people with breast cancer today to end the disease tomorrow.” Oswell’s experience began after she found a pea-size lump in her breast that rapidly grew to the size of a marble. The Ocala resident soon was diagnosed with triple negative breast cancer, a
lisa crigar/staff photographer
Renee Oswell and her Making Strides team, the Chiliheads, worked together gathering supporters for their Making Strides Against Breast Cancer team coming up on Saturday, Oct. 19, at the College of Central Florida. very aggressive cancer with no targeted treatment. Multiple surgeries, along with six months of chemotherapy, could not deter Oswell’s strong determination to survive. Her family rallied around her with encouragement when she decided to help the hair-loss process along by shaving her head. Her husband, Tony Oswell, and her brother, Kelly Clark, intentionally sported bald heads as a show of support. “It was great to have my family all around me. There is nothing quite like losing your hair and breast to make you humble and a lot less vain,” Oswell said. “Little did I know when I was taking care of my dad with cancer, I would be training for my own battle. He taught me how to fight,” she added. This year’s Making
Strides event marks Oswell’s fourth. Her team name is “PTK & Chiliheads Go Pink.” PTK, Oswell explained, stands for Phi Theta Kappa, an international honor society of the College of Central Florida. Chiliheads is comprised of Chili’s restaurant employees and anyone who likes to eat there. Tony Oswell is a managing partner at a local Chili’s outlet. “Our team has raised more than $200 already and would appreciate any donation of any size while this event is going on,” Renee Oswell said. Emily Perry, 12, Oswell’s niece, participates in the walk every year as a community service project for school. Oswell said at the 2012 event, Emily wore a pink tool belt and passed out lollipops. “This is Emily’s second year as team captain,”
Oswell said. “She talks about it at school, and hands out information.” Oswell’s mother-in-law and father-in-law even drive up from Fort Lauderdale each year to cheer her on in the walk. “The streets become a virtual sea of pink, with children and adults supporting this cause. Last year I called myself ‘Super Survivor’ and wore a cape and pink boots,” Oswell said. It should not be hard to spot Tony Oswell this year; he will be dressed in a chili pepper costume. “And it doesn’t matter if there is one or 200 walkers, we just want to get the word out. There is genuine cancer camaraderie out there,” Renee Oswell said. She said her personal journey has placed her on a higher level of understanding while
making strides against her own challenges, while also gaining empathy for others. “Once you have survived cancer, filled with the unknown, you realize what is no longer important. It doesn’t matter the kind of car I drive or the clothes I wear. What does matter is that every breath I take is a gift. Cancer has helped me become compassionate and grateful. I want to help as many others as I can,” Oswell said. “There is a simple blood test available which isolates the gene mutations. This test is very costly, but I urge anyone with a family history to find a way to get this done,” she added.
If you go What: Making Strides Against Breast Cancer When: Registration 7 a.m., walk begins 8:30 a.m., Saturday, Oct. 19 Where: College of Central Florida, 3001 SW College Road, Ocala Cost: Donations, online or at event Contact: www.cancer. org/stridesonline; 800227-2345; local branch of the American Cancer Society, 629-4727 Also: “Give Back Night” is from 5 to 10 p.m. the fourth Monday of each month, year-round, at Chili’s, 3501 SW 36th Ave., Ocala. Ten percent of the tab will be donated when patrons mention Making Strides to servers. (237-6611).
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area breast cancer awareness events
Chili’s Give Back Night: During
Chili’s Give Back Nights, visit a local Chili’s restaurant every fourth Monday of the month and tell the server you are there for Give Back Night and 10 percent of your tab will be donated to Making Strides Against Breast Cancer.
Through Oct. 12
The Standing Up to Breast Cancer Initiative: Buy a pink
lawn flamingo for $12, at Ocala Regional Medical Center, West Marion Community Hospital, Ocala Health’s Senior Wellness Community Center and Advanced Imaging Centers. Supporters are encouraged to be creative with the flamingo and share a story at www.Facebook.com/OcalaHealth. All funds will benefit Michelle-OGram, which helps women get a mammogram when they cannot afford one.
Scrapbooking: Event to benefit
Making Strides Against Breast Cancer, 6 p.m., Marion County Extension Auditorium, 2232 NE Jacksonville Road, Ocala. $5. (7325982)
Pink foil-wrapped ham: One
dollar from each limited-edition pink foil-wrapped ham sold at participating HoneyBaked locations will benefit the National Breast Cancer Foundation. Customers also can participate in “Friends Foiling Breast Cancer Fridays” and wear pink and bring a friend for lunch and receive buy-one, get-one free sandwiches, and/or add a donation of $1 or more to a purchase to benefit the foundation. To find a location, visit honeybaked.com.
Making Strides Against Breast Cancer Walk: Registra-
tion 7:30 a.m., walk at 8:30 a.m., College of Central Florida, 3001 SW College Road, Ocala. Non-competitive 5K and family fun event with music and youth activity station.
(629-4727 or www.makingstrideswalk.org/ocala)
Making Strides Against Breast Cancer golf tournament, 11:30 a.m., Country Club
at Silver Springs Shores, 633 Silver Road, Ocala. $75. (rmcallister@ nationinsurance.com or 732-3881)
Pink bracelets were on display at the Think Pink event in Belleview last month.
American Cancer Society’s Cancer Prevention Study-3:
Open to anyone 30 to 65 never diagnosed with cancer (not including
basal or squamous cell skin cancer) and willing to commit to periodic surveys at home for 20 to 30 years. Informational meeting, 7:30 a.m., West Marion Community Hospital Professional Building, 4600 SW
46th Court, Ocala; www.gainesvilleocalacps3.com or toll free 1-888604-5888.
“Thursday Night Live:” 6 p.m.,
Palm Grove at Oak Run, 6951 SW 115th St. Road, Ocala, hosted by Ocala Royal Dames for Cancer Research; food, dancing, more; $25; 854-8187.
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Pre-chemo options may help women preserve fertility Emily Wax The Washington Post
hen Michele Foust received a diagnosis of Stage 2 breast cancer this spring, she typed out a list of questions about her treatment. At the top of the 26-yearold’s concerns was an unknown that haunts many young cancer patients: “If I survive, will I be able to have children?” Foust’s breast surgeon was unsure and told her she thought it was likely that chemotherapy would impair her chances by damaging healthy eggs as fast as it killed other rapidly dividing healthy cells such as hair follicles. Indeed, says Neelima Denduluri, a breast medical oncologist at Virginia Hospital Center, “chemo is a real risk to fertility.” Certain regimens, she says, “are more likely to cause infertility and decreasing of sperm count,” with up to 80 the washington post percent of patients Michele Foust, here with her husband, Andrew, plans affected, with exact rates to have her frozen eggs thawed when she is ready to depending on the type of become pregnant. cancer treatment and age at diagnosis. not yet been studied. But funding, according to Despite this, medicine in vitro fertilization (IVF) Teresa Woodruff, a has come a long way rates are around 50 professor of obstetrics and recently toward helping percent for women gynecology at the Feincancer patients — women younger than 35. berg School of Medicine at especially — preserve (For men with cancer, Northwestern University. fertility prior to treatment. freezing sperm before Woodruff refers to such The most common and treatment is far less procedures as part of successful option for a invasive and less expenoncofertility, a new woman with cancer is sive.) discipline that bridges freezing an egg or embryo There are also experioncology and reproducbefore undergoing mental options such as tive medicine. chemotherapy or radiaovarian tissue freezing, in “I really appreciated tion. Once the patient which all or part of an there were so many decides she is ready to get ovary is removed and the advances in cancer pregnant, she is given outer area, which contains therapy, yet so many estrogen and progesterone the eggs, is frozen in strips young survivors were to prepare the lining of the for later use. The ovary ending up sterilized,” uterus. The embryo is then can be reimplanted when Woodruff said. “There thawed (or the egg is the patient is well. The was a real need for a focus inseminated) and transprocedure typically costs specifically in this field.” ferred into the uterus. around $12,000; because it ■■■ Success rates specifically is experimental, research About 140,230 Amerifor cancer patients have centers often provide cans younger than 45 will
receive a cancer diagnosis this year, the American Cancer Society projects. The large majority of them are likely to survive for five years or more. But only recently has fertility been factored into a patient’s treatment plan, according to Mark Payson, a reproductive endocrinologist at Dominion Fertility, a practice based in Arlington, Va. When he speaks to breast cancer support groups, patients say that “only half of their oncologists talk to them about fertility options.” Last month, a study by researchers at the University of Sheffield in England found that only 40 percent of young female cancer patients were happy with the way their doctors discussed the options they had to preserve fertility. Most doctors are typically more concerned with saving the patient’s life than with fertility options, Payson said. When Ilana Brunner’s breast cancer was discovered in 2009, she quickly embarked on fertility treatments in order to freeze some embryos before chemo began. But she was concerned others might not know to take the same steps. “When I started chemo, they hooked me up to the machine and made me watch a video about cancer and chemo. But the video never mentioned fertility for women,” though it mentioned it for men, said Brunner, a 40-year-old lawyer who lives in Silver Spring, Md. “I actually complained. To me, it was a travesty.” Foust’s fate was different. A few days after her initial conversation, she and her husband got an urgent phone call with a
new plan for her treatment. Her breast surgeon at Virginia Hospital Center had set up a conference call with Stephen Lincoln, a reproductive endrocrinologist with the Genetics & IVF Institute’s fertility preservation center for cancer patients: She would be able to try to freeze her eggs or embryos before her treatment. Genetics & IVF, along with other well-known fertility centers, is part of a nationwide effort to encourage oncologists and their staffs to talk to cancer patients about their increasing fertility options. “Everyone is recognizing now that talking about fertility is a part of dealing with cancer,” Lincoln said. “People aren’t just being rushed right into treatment anymore.” Denduluri concurs. “The awareness is just much higher now, whereas before many were concerned with finding the so-called cure and saving the patient’s life,” she said. “It’s more a balancing act now, and there are more strident feelings about the importance of bringing up fertility issues at the beginning of treatment.” ■■■
In late May, Foust went to the Genetics & IVF pharmacy near her home in Annandale, Va., and went home with a supply of vials of gonadotropins, hormones that stimulate the ovaries to produce eggs for retrieval. She would have to give herself injections every day for the next two weeks. Then Lincoln and his team would extract her eggs, a procedure done with light sedation. (The process is typically the
same one used for any woman who would like to have her eggs frozen to preserve her ability to have children.) In breast cancer cases, doctors want to keep estrogen levels low because of concern that raising them might accelerate the growth of a tumor. Foust’s doctors combined a low dose of gonadotropin and a medication that promotes ovarian stimulation while keeping estrogen levels low. “It was amazing that they could actually do this, safely. At the same time, you never think as a 26-year-old that the ability to bear children — something I was looking forward to — will be taken away from you,” said Foust, an emergency room nurse. She decided to freeze eggs instead of embryos because she was concerned about having embryos she might not use. There was also a chance that she could have children naturally, depending on how much harm chemotherapy caused to her fertility. “If I had children somewhere frozen, I would wonder what to do: Do you donate them? Do you send them to science?” she said. Just a few years ago, Foust wouldn’t have been able to consider this problem. Back then, egg freezing had far lower success rates and was considered experimental by the American Society for Reproductive Medicine. That label was lifted in October, thanks to improved success rates with a new flash-freezing technology known as
fertility on Page 5
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Sunday, October 6, 2013 |5
fertility: Treatments rarely covered by insurance and drugs are costly Continued from 4 vitrification. “It’s been a massive leap forward,” said Frank Chang, a reproductive endocrinologist at Shady Grove Fertility Center, which has offices in Washington, Maryland, Pennsylvania and Virginia. A growing number of oncologists reject the traditional view that the hormones used to stimulate eggs for retrieval — as well as pregnancy itself — might increase the risk of developing certain cancers. Today many doctors see both the freezing process and pregnancy as safe after three to five years of tamoxifen, a hormone drug used with breast cancer patients, according to Denduluri. And although large-scale data are still being collected about recurrence rates after pregnancy, tumor histories are also looked at on a
case-by-case basis to see if carrying a baby is safe, according to Denduluri. There are also smaller studies showing that pregnancy after a breast cancer diagnosis does not carry a negative outcome as long as a patient waits two to three years after starting treatment with tamoxifen, Denduluri said. Treatments are viewed as elective and are rarely covered by insurance. Fertility drugs can cost $6,000 a round or more; egg retrieval and freezing can be another $5,500. For freezing embryos, the process can run $6,500 and more. ■■■
Many fertility centers help cancer patients find help with funding their drugs. The Livestrong Foundation’s Fertile Hope program has helped close to 4,000 survivors since 2004, said Ashley Koenings, senior navigator for fertility services. Each month, the program helps
about 80 people. But even with financial help, the emotional toll is often severe. “For once, could my body work with me instead of against me?” Brunner said of her efforts to retrieve her eggs. “During that time, a pregnant woman in a supermarket put me in tears.” Brunner froze her eggs twice — once before her double mastectomy and another time before chemotherapy. “Someone said, ’Are you sure you want to do this and start poking yourself with needles?’ And I said, ’This is nothing compared to what I have to do with cancer.’“ After two unsuccessful embryo transfers, including with a gestational carrier (a woman who volunteered to carry the pregnancy for Brunner), she tried again, post chemo. She was able to get one viable egg the first round and one more the second. Both were
fertilized with her husband’s sperm using IVF and were implanted in a new gestational carrier. Her positive outcome in retrieving viable eggs after chemo is uncommon, doctors said. Today, she has twins who are 9
months old. At a recent Shady Grove Fertility’s Family Day, her twins wore onesies that said, “Made with love . . . and science.” Meanwhile, Foust was able to freeze 15 eggs. When she is ready to
become pregnant, the eggs can be thawed, fertilized and transferred to the uterus as embryos. She is currently going through eight rounds of chemotherapy. Knowing that her eggs are frozen brings her comfort.
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Ilana Brunner had her eggs frozen before her double mastectomy and again before chemotherapy. Neither step led to a pregnancy. But she later retrieved eggs that were fertilized with her husband’s sperm, resulting in the birth of twins Lyla, left, and Aryeh.
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Sunday, October 6, 2013
Wearing the badge of a breast cancer survivor
Breast cancer survivor Gene Kelly is enjoying every day after extensive treatment.
Sangi Blair says ‘faith, family and friends’ helped her get through the most trying time in her life.
By Rick Allen Staff writer
By Charles Lawrence Correspondent
n the past year, Gene Kelly has taken a holiday cruise, secured a new job, traveled to Washington, D.C., with the Trinity Catholic High School band — and developed a new appreciation for life. This time last year, he was wrapping up chemotherapy treatments for breast cancer and was about to plunge into 26 days of radiation therapy. That’s right, he. “It’s a new year, a new start,” Kelly said. Kelly is a one-percenter in the sense that he is a male who was diagnosed with and survived breast cancer. One percent or fewer of new breast cancer diagnoses each year are men. This year, the American Cancer Society estimates that 2,240 men in the U.S. will be diagnosed with what is typically considered a women’s condition. Slightly more than 400 men will die from it. According to the National Cancer Institute, the survival rate for men is about the same as for women. It’s just that in men, breast cancer often is diagnosed at a later stage, thus decreasing the odds of survival. Kelly said he gets a lot of surprised reactions when other men find out he has had breast cancer. “They look at me, ‘You’re kidding, right? I heard of that. You’re the first one I’ve met,’” he said. And even some women aren’t aware that men are not immune, he added.
ABOVE: Breast cancer survivor Gene Kelly talks about his cancer diagnosis in his Ocala home last year. LEFT: A year after wrapping up his treatments, he is back doing what he loves — volunteering with his son’s Trinity Catholic High School band.
“I was floored when my oncologist said men are as likely to get breast cancer as they are to get testicular cancer,” Kelly said. When he finished radiation at the end of last year, Kelly and his wife and son took a cruise for the New Year’s holiday. “It was good to get out and do some stuff,” he said. While at sea, he interviewed for a new job with Marion County, and got it. “I now manage the parts room for the county,” Kelly said. He oversees 1,500 pieces of equipment, from lawn mowers to the county’s fire trucks. He also finds time to help out with the Trinity Catholic band, as well as help run retreats for Blessed Trinity Catholic Church.
As an involuntary member of a very limited fraternity, Kelly has found he is in demand to talk about male breast cancer awareness, such as addressing a class of second-year medical students at the University of Florida. “Well, the class was set up auditorium style,” he said. “I was dressed nice and sat down in the front row. I could hear all the students talking among themselves, ‘I thought we were going to have a guest speaker about breast cancer. I guess not.’ “If you could have seen their faces when I was introduced and stood up, they were awestruck. They were more stunned by me than by the fact that men can get breast cancer,” Kelly said. “I hope I opened their eyes some.
That whatever specialty they go into, when somebody comes through the doors don’t minimize what it could be,” he added. Kelly said his doctor initially considered the lump in his left breast was “probably just a cyst or something” — but ordered a mammogram anyway. “I have a newfound respect for what women go through with them,” he quipped. In August, Kelly was a keynote speaker at the kickoff rally for the Making Strides Against Breast Cancer fundraising walk in Marion County later this month. “I was thrilled when Gene agreed to come and share his story at the MSABC kick-off event,” said Morgan Brantley, community representative for the American Cancer Society in Ocala. “I feel like we lose sight of the fact that cancer does not discriminate when it comes to gender, because breast cancer is publicized with all the pink and is directed at women,” Brantley added. “Gene getting up and telling his story hopefully gives
other men the confidence to come forward and share their stories as well.” Kelly said he was a bit embarrassed by the pink “survivor” sash he was asked to wear and that it might not have been so bad had it been a pink and blue sash. Blue is the symbol for male breast cancer awareness. But, Kelly said, he was more concerned other survivors might think he was making light of them. “No, I really am a breast cancer survivor,” he said. “I have nothing to hide. “I’ve been blessed,” Kelly continued. “If I hadn’t found that lump by accident, I might not be here now. But I’m living on restored time; I do have a future. I’m looking forward to my kids growing up, maybe grandkids someday. “If one person gets to realize they need to keep an eye out, that’s good,” he said. “I’ve done my job.” Rick Allen can be reached at rick. email@example.com or 8674154
angi Blair was a married mother of two who had no family history of breast cancer and no real risk factors. She exercised regularly, was very fit and never smoked. Blair, the wife of Marion County Sheriff Chris Blair, was diagnosed with the disease in March 2000. Sangi Blair, Academy Coordinator for the College of Central Florida’s Criminal Justice Department, discovered a lump when she was 38 years old and because of a fear of doctors and needles, did not get it checked out for a year. Given her young age and low risk, she thought it might be a cyst. Mammograms, however, confirmed her worst fears. She had dual ductal carcinoma in situ. “It was like getting hit between the eyes,” Blair said of the diagnosis. Her husband and family members went with her to every doctor appointment to understand what she would endure and to offer help and support. Blair had a double mastectomy at Moffitt Cancer Center in Tampa. Fortunately, radiation and chemotherapy were not necessary. Her then-8-year-old daughter, Alesa, was allowed with her on the exam table as Moffitt likes to directly involve family members so the cancer experience isn’t quite so scary for them. Blair
believes her ordeal inspired Alesa to major in pre-med at the University of Florida, where she is currently a senior. “I was 8 years old at the time of my mom’s diagnosis. I remember being really scared. I wasn’t sure why she was laid up all the time,” Alesa Blair, 21, said. “It was really hard because you are not sure what’s going on, but you know it’s bad. Our family
went with her to every appointment. The doctors and nurses at Moffitt were great. They let me help do her shots and tried to get me involved. That experience inspired me to be pre-med. I’m ecstatic about how she’s doing now,” Alesa said. Sangi Blair said she worries about genetic pre-disposition in terms of Alesa. “Considering the age when I
was diagnosed, I have a lot of concern for my daughter. What’s the impact on her? I have to believe with research and medical advancements, there is going to be a cure. But we’re always going to be checking her, and hope she’s good,” she said. The Blairs also have a son, Jason, 34, who lives in Thomasville, Ga., and is a high school teacher and football coach.
bruce ackerman/staff photographer
Sangi Blair, right, and her daughter, Alesa, pose at M.O.M.S. Park in Ocala last month. Blair, the wife of Marion County Sheriff Chris Blair, was diagnosed with breast cancer in March 2000 and underwent a double mastectomy.
THINK PINK | 7
As she went through recovery, Sangi Blair’s friends and family members helped care for her and the family’s animals. The congregation at her church, Blessed Trinity Catholic Church, and many other churches, started prayer chains for her. Her priest, Father Patrick Sheedy, offered spiritual guidance. She kept an album filled with cards and letters from well-wishers. “Faith, family and friends. That’s what gets you through,” she said. “Going through cancer, you have to get your mind right with God,” she added. This year, Blair is serving as chairwoman of the Making Strides Against Breast Cancer Walk of Marion County, which will be held Saturday, Oct. 19, at the College of Central Florida. Today, she said, she feels great. “I’m very blessed. I’d advise anyone going through this disease to listen to your doctors, have a positive attitude and reach out to others for support,” she said. Battling this disease isn’t about her, she added. It’s about her children and wanting to be around when they graduate, get married and have kids of their own. “There is no way I could have gone through this alone. It would be difficult to get through this without the kids. That’s what gives you the fighting spirit,” she said. “The challenges of battling cancer will bring a family closer and will certainly change the mind-set of how fragile life is and how quick it can be taken away,” Chris Blair said. “My wife is a survivor who lives every day to the fullest, keeping a smile on her face while encouraging other victims of cancer to always keep up the fight,” he added.
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Genetic testing makes mainstream what once was a ‘radical’ treatment By Kristine Crane Staff writer
endy Blaznik has a strong family history of breast cancer. Her grandmother and mother both had the disease, and because Blaznik’s mother was diagnosed at age 45 — and breast cancer is generally both more aggressive and has a genetic component if it occurs before age 50 — Blaznik knew she was at high risk. She was 27 when her mother died from the disease, and she considered having a preventive mastectomy. “But my doctors said that I was too young and that insurance wouldn’t cover it,” she said. But, Blaznik said, for her 23-year-old daughter, Kristian, removing her breasts preventively is an option. “She’s very much ‘take care of business,’ said Blaznik, who works as the purchasing director at the Marion County Sheriff’s Office. Blaznik’s doctors also discouraged her from getting genetic testing for the BRCA mutations, which were then just emerging. Back then, insurance companies didn’t cover cancer treatments for women testing positive for the mutations because they were considered pre-existing conditions. That was the early ‘90s, and about a decade later, at age 36, Blaznik was diagnosed with breast cancer and would have both of her breasts removed. “It moves very quickly when you are young. There was no talk of lumpectomy. There was no talk of mastectomy. It was a bilateral mastec-
tomy all the way. There was really no choice because of my family history,” she said. Five years ago, Blaznik finally tested for the BRCA mutations. “My doctor recommended doing it. He said, ‘Let’s see where you stand because of your daughter,’” she said. The results of Blaznik’s test were inconclusive, and now they are waiting to see if insurance will cover testing for her daughter.
Breast cancer genes
Cancer is, in part, a genetic disease, and scientists have some of the strongest clues about why for breast cancer. Mutations in the BRCA genes — known as BRCA1 and BRCA2 — are linked to breast cancer, putting people who carry the gene at significantly higher risk for breast and ovarian cancer, and predisposing them to higher risk for other cancers as well. With the advent of BRCA testing nearly two decades ago, women with strong family histories of breast cancer have increasingly gotten tested for the genes. And what they are doing with that information also has evolved. Actress and film director Angelina Jolie’s decision to get a double mastectomy and reconstruction of her breasts last May put the spotlight on what was once considered a radical move but is now becoming a more mainstream decision for women who are at very high risk of the disease. According to the National Cancer Institute, 55 percent to 65 percent of
Jerry and Wendy Blaznik enjoy a stunning sunset together at Carney Island Park on Lake Weir. Wendy Blaznik, whose grandmother and mother both had breast cancer, was diagnosed with it when she was just 36 years old. women with the BRCA1 mutation develop breast cancer by age 70, compared to 12 percent in the general population. Having the mutation is rare: only between 1 in 400 and 1 in 800 (0.10 percent and 0.25 percent) of people in the general population do, so they have to meet certain criteria in order for insurance to cover the testing. In general, women
or their first-degree relative (mother, sister) who are diagnosed before age 50 have a higher risk of being a gene carrier. “We encourage people to call up if the cancer is on the same side of the family,” said Lisa Brown, a genetic counselor at University of Florida Health Shands Hospital. Brown added that families in which multiple members have cancer also
are indicative of the existence of the BRCA mutation.
When Gerry Petrone of Archer was diagnosed with breast cancer at age 55, the Hospice nurse who had taken care of many dying breast cancer patients took the news like a death sentence.
Her doctor reassured her that it wasn’t; and indeed, a lumpectomy, chemotherapy and radiation would keep the cancer at bay — briefly. The cancer recurred six months later, so Petrone decided on a more aggressive treatment course: removal of her right breast. “Somewhere in there the doctor started talking about family history,” Petrone said. Her father had died of colon cancer, but no one else in the family had cancer, so it was unlikely that Petrone carried the BRCA genes, which are strongly linked to breast cancer risk. But her husband Frank’s family tree was filled with cancer: two of his sisters had had breast cancer, and one died of the disease at age 35. The other survived the disease — twice — and then got uterine cancer. Another sister died of lung cancer at age 45. His mother died of pancreatic cancer at age 46. His niece was diagnosed with breast cancer at age 30. “Dr. Carroll decided to test Frank for the BRCA gene, and he tested positive,” Gerry said. “We joked that you should know your partner’s genetic profile before you get married.” For Frank Petrone, learning that he was a BRCA mutation carrier, to some extent, clarified the reason behind all the cancer deaths in his large Italian-American family. “I had just thought that we were unlucky,” Petrone said, adding “I never thought that I would have to get mammograms and sonograms every year.” Carrying the mutation also puts Petrone, himself, at risk for developing
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testing: Not all women are candidates for mastectomy Continued from 8 breast cancer (and male breast cancer is another sign that the BRCA mutation may run in the family). But male breast cancer is still very rare — 100 times less common than it is in women. So Petrone was less worried about his own risk and immediately concerned with his two daughters’ risk. The Petrones’ eldest, Ann Marie, 39 years old when her father was tested, was married and done with having children — and prepared to undergo a double mastectomy and reconstructive surgery if she tested positive for the gene. (BRCA mutation carriers often get prophylactic mastectomies to decrease their disease risk.) Her younger sister Christia, though, didn’t really want to know if she carried the gene or not. Thirty-one years old, unmarried and uninsured, she wasn’t prepared to lose her breasts. Ann Marie flew down from Virginia, and the two sisters got tested on the same day. The news, Gerry said, was “heartbreaking.” Ann Marie tested negative, and Christia, positive. “I had told Dr. Carroll that there is only one thing worse than having breast cancer, and that’s having a child with breast cancer,” she said. “I didn’t want her to go through what I went through.” Gerry pushed Christia toward surgery, but Christia opted for close surveillance for a couple of years. Every four months she underwent either an ultrasound or an MRI. “For me (not doing surgery right away) was being young and not married and wondering how it was going to change me physically,” Christia said.
Breast reconstruction: a growing option Gerry herself had started toying with the idea of getting her right breast reconstructed.
brad mcclenny/staff photographer
Gerry Petrone and her daughter, Christia, at their home in Archer. Gerry was diagnosed with breast cancer at age 55, and Christia tested positive for the BRCA gene. She had been wearing a breast prosthesis since her mastectomy, but sometimes it got in the way, and she wore baggy clothing in case it fell out. She attended a seminar on breast reconstruction at North Florida Regional Medical Center led by Dr. Jason Rosenberg, a nationally-renowned breast surgeon. She liked what she heard and did some follow-up research after the seminar before doing the surgery. “It was the best decision I ever
made,” said Gerry, who sports a pink tank-top that reads “I love my little tatas.” She said that it’s great to be able to wear whatever she wants to now. Gerry’s decision inspired Christia to agree to surgery as well. In all, Christia underwent four surgeries to remove and reconstruct her breasts; she also had her ovaries and uterus removed. “I knew I was done having kids, so that didn’t bother me at all,” she said. Christia has one daughter, 15-year-old Lauren,
who has not yet been tested for the BRCA mutation. By undergoing the surgeries, Christia’s risk of breast cancer went from 88 percent to 3 percent, which is lower than the 12 percent risk among the general population. She also lowered her risk of ovarian cancer, a rare but often deadly cancer that is also strongly associated with the BRCA mutation. “I look at it as a guarantee that she will see her daughter graduate from college,” said Frank Petrone, who convinced his brother to test for the BRCA mutations (and tested negative). Frank’s older sisters — now in their 70s — don’t want to get tested, even though the daughter of one sister was diagnosed with breast cancer. Christia said that recovering from her surgeries was intense, but she’s pleased with the result. Rosenberg performed the tissue-sparing reconstruction, for which he is renowned, in which tissue from a patient’s stomach is used to remake the patient’s breasts. “Dr. Rosenberg said that ‘if you don’t like it, at least you’ll get a tummy tuck,’” Christia said. Rosenberg said the benefit of this is that the tissue grows into another part of the patient’s body, so the results last forever. And women are overwhelmingly pleased with their results, he said, pulling out his desk drawer filled with thank-you cards and even a song that a woman wrote for him in praise of his work. Rosenberg said that by the time women — with cancer, or those at very high risk of it — get to him, he’s like the light at the end of the tunnel. “We change peoples’ lives in a positive way,” he said. Even though the option of breast reconstruction has grown as surgeons have become more skilled at doing them, not all women with breast cancer or at high risk of getting it are good
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Reducing Your Risk
Here are some steps you can take for breast cancer prevention and early detection based on your stage of life, according to Dr. Karen Daily, an assistant professor of medicine at the University of Florida and the founding director of the high-risk breast cancer clinic:
In your 20s & 30s: ■■Do
breast checks two weeks after your menstrual cycle. ■■Know your family history. ■■Breastfeed following pregnancy. ■■Get in the habit of regular exercise and good diet.
At age 35:
the Gail Model risk assessment, and chemoprevention, if you are done having children and have an above-average risk of breast cancer.
In your 40s: ■■Continue regular
breast checks and healthy habits. ■■Undergo annual mammograms starting at age 40.
In your 50s: ■■Avoid Hormone
Replacement Therapy. ■■Continue to maintain a healthy weight. ■■Undergo annual mammograms and regular breast checks. ■■These practices can continue in the sixth, seventh and eighth decades of life.
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omen with a higher-than-usual risk for developing breast cancer should consider taking one of two medications approved by the Food and Drug Administration to reduce that risk, a federal panel has concluded. But the medications, which can raise a woman’s risk of developing blood clots, are not for everyone and should not be taken for breast cancer reduction by most women, the U.S. Preventive Services Task Force said. Taken daily by women who are more likely than most to develop breast cancer, the chemotherapy drug tamoxifen or the osteoporosis drug raloxifene have been shown to drive down that risk. The federal panel of experts said physicians and patients should discuss taking one of those medications in cases where a woman’s risk of developing breast cancer over the next five years is calculated at 3 percent by one of two reliable breast cancer risk calculators. But in certain cases, a woman’s other vulnerabilities — including a personal or family history of stroke or blood clots — might outweigh the possible benefits of the breast cancer prevention drugs, the panel said. The National Cancer Institute estimates that 12.4 percent of women born today will develop breast cancer. But many
factors influence a woman’s risk, including advancing age, the age at which she began menstruating, whether she has a sister or mother who had the disease, and the density of her breasts. Those and other factors are used in the two separate calculators that can guide a woman’s decision-making: www. cancer.gov/bcrisktool/ or http://bcsc-scc.org/ BC5yearRisk/. These risk calculators, and the task force’s measured recommendations, do not apply to women who have the BRCA-1 or BRCA-2 gene mutations, which confer an extremely high risk of developing breast cancer, and they don’t apply to women younger than 35 or older than 79. Past research has suggested that having a five-year risk of developing breast cancer that was 1.66 percent or greater was sufficient to justify the use of chemoprevention such as tamoxifen. But the task force suggested that, given the potential harm both medications can cause, the women who would clearly benefit the most were those with a five-year breast-cancer probability of 3 percent or higher. Over four trials, however, four women developed potentially deadly blood clots for every 1,000 women who took tamoxifen. Over two trials, seven women of every 1,000 who took raloxifene developed blood clots.
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3-D biopsies offer new hope testing: The BRCA mutation no in fight against breast cancer longer a pre-existing condition By Marina Bolotnikova Pittsburgh Post-Gazette
ome women tested for breast cancer now have a faster screening option that eventually could supplant older screening techniques across the country. In June, Magee-Womens Hospital of University of Pittsburgh Medical Center in Pennsylvania became the first hospital in the country to perform a 3-D guided breast biopsy, a procedure that more quickly and accurately locates possible cancers and exposes patients to less radiation than older methods, said Dr. Jules Sumkin, chief of radiology at Magee. The idea to develop the technology came when Magee researchers worked with Hologic Inc., a company that manufactures mammography and breast biopsy equipment, to develop tomosynthesis, a 3-D mammography technique, in 2005. Radiologists found that tomosynthesis allowed them to find abnormalities in the breast that are difficult to see using conventional mammography. Tomosynthesis has allowed radiologists to identify about 30 percent more breast cancers than conventional mammography, Sumkin estimates. But it was difficult to reproduce the advanced images taken by tomosynthesis mammography with the imaging tools in existing biopsy technology. Magee researchers and Hologic addressed that
Tomosynthesis allows doctors to detect and treat deadly cancers early, which is much less costly than treatment at later stages. issue by developing a 3-D guided breast biopsy technique. The technology improves biopsy technology in much the same way that tomosynthesis advanced mammography: Three-dimensional imaging creates a complete reconstruction of the breast to more accurately identify possible lesions and calculate their depth. In traditional guided biopsies — known as stereotactic biopsies — images are taken at two angles of the breast to calculate the depth of the possible lesion. The 3-D technique is able to measure lesion depth more accurately. Not all women require biopsies using mammography as a guide. But those who do, including women with especially hard-to-detect cancers, will especially benefit from 3-D guided biopsy, Sumkin said. “If we can do a biopsy with ultrasound guidance, that’s preferable,” he said, “but there is a subset of patients where you can’t find it by ultrasound” because of body variations.” During a 3-D biopsy, a patient sits upright rather than lying on a table. This benefits women who have difficulty lying down due
to arthritis or other health complications, Sumkin said. Among other benefits to patients using this technology, procedure time is shorter and exposure to radiation is reduced. Because the stereotactic method requires that at least two images be taken, more X-ray doses are needed. Unlike stereotactic biopsies, which require expensive, standalone machines, 3-D biopsies are performed using a piece of equipment attached directly to tomosynthesis machines, which saves money, Sumkin said. Still, tomosynthesis is far less prevalent than two-dimensional mammography. Sumkin cited cost as the main barrier to hospitals’ adoption of the technology. “For a hospital to buy this equipment and not be reimbursed for it does not work in this day and age,” he said. Magee so far has performed 50 to 60 3-D guided breast biopsies, Sumkin estimates. Even though it’s a new procedure, some insurance plans have been covering its cost, but some, including Medicare, do not cover tomosynthetic mammograms, he said. Sumkin is optimistic that the benefits of tomosynthesis can save money in the long term. Tomosynthesis allows doctors to detect and treat deadly cancers early, which is much less costly than treatment at later stages.
Continued from 9 candidates for mastectomy and reconstructive surgery. “Women have to be gene carriers or have some type of concerning hereditary condition for me to do a preventive mastectomy on them,” said Dr. Lisa Spiguel, assistant professor of surgery at the University of Florida College of Medicine. When those conditions are met, Spiguel said that younger women have increasingly opted for preventive mastectomies, especially if they have young children. Whenever possible, Spiguel encourages women to get through their childbearing and breastfeeding years before they consider removing their breasts.
Boon of genetic testing
Insurance companies no longer consider the BRCA mutation a pre-existing condition that would limit patients’ coverage, and the Women’s Health and Cancer Rights Act in 1998 opened the door for women undergoing mastectomies to be covered by insurance for reconstructive surgery as well. As a result, more high-risk women are not hesitating to undergo genetic testing. Brown said, “I started the (hereditary breast cancer) program in 2001 and was knocking on doors. Now we have a waiting list,” Brown said. “Awareness is definitely there.” She added that Angelina Jolie’s announcement of her surgery didn’t cause an increase in “inappro-
erica brough/staff photographer
Oncologist Karen C. Daily visits with patient Sara Tillmon of Tallahassee during an appointment at the Hematology and Oncology Shands Infusion Center at UF Health Shands Medical Plaza in Gainesville. priate referrals,” adding, “It did help women come out of the closet, so to speak.” Apart from family history, other breast cancer risk factors include early menarche and late menopause — in other words, a longer period of estrogen exposure. Spiguel said that all women, regardless of risk, need to know their bodies. “Everyone’s breasts are lumpy and bumpy, but if you notice change” consult your doctor. “Screening mammograms are shown to increase survival, so don’t be scared,” Spiguel added. General guidelines are that women should start screening at age 40, but if you have a first-degree relative who was diagnosed with breast cancer, start screening a decade before their age at diagnosis. So if you’re mother was diagnosed at 52, start getting mammograms at 42. Dr. Karen Daily, the founding director of the
high risk breast cancer clinic at UF, said there are other things that high-risk women can do to lower their risk. For example, taking chemoprevention drugs such as tamoxifen reduces breast density, which in turn lowers breast cancer risk. “It’s frustrating because tamoxifen reduces breast density, but it’s a hugely underused technique. Only about 4 percent of people qualified to take it do take it. I’ve seen a lot of missed opportunities,” Daily said. Daily’s clinic focuses on prevention and early detection, and she encourages people to maintain a healthy weight and eat a low-fat diet. “Everyone forgets the common things, but it doesn’t get old to quit talking about them,” she said. Contact Kristine Crane at 338-3119, or kristine. firstname.lastname@example.org
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