The post-pregnancy checkup was supposed to be routine.
A mammogram, her doctor suggested, would provide a baseline for when she turned 40—the age at which doctors suggest screening for the “C” word. Her 40th birthday was still four long years away.
After the exam, Missy Stein sat in the waiting room at a breast center near her home in Monmouth, N.J., leafing through magazines as she awaited the results. Once she got them she would be on her way, worry free, and step back into the frantic stream of everyday life. But she began to notice the weight of the minutes.
“People kept coming and going, coming and going, and I’m just sitting there,” recalls Stein, who now lives in Philadelphia. “Finally they called my name and told me they wanted to do an ultrasound and then they asked me to come back for a stereotactic biopsy. The next day the radiologist told me something I’ll never forget.
“‘Missy, someone must have been watching out for you,’ is the way she phrased it. ‘If you had waited till 40, I wouldn’t have such good news. You have breast cancer, but you’re going to live.’”
Stein—just 36 years old at the time, and a mother of five children—chose to have a double mastectomy to limit any chance of the cancer spreading. When she awoke from the surgery she would also have new “pretty breasts” courtesy of a gifted plastic surgeon. She learned that the cancer had spread to her lymph nodes, for which she would later have to endure multiple rounds of chemotherapy.
The chemotherapy caused her hair to fall out and left her feeling nauseated, but at least she was alive. She had joined the ranks of “survivors.”
Thanks to advancements in medical technology and understanding, survivor stories such as Stein’s are becoming more common. Research into molecular medicine has helped physicians better understand a patient’s individual cancer, as well as how the cancer behaves and what feeds it, according to Ari Brooks, M.D., chief of surgical oncology at Drexel University College of Medicine.
“In the ’80s we didn’t give chemo to anybody,” says Dr. Brooks, who built the infrastructure for the Drexel/Tenet Women’s Health Project, which provides screening and treatment for breast and cervical cancer to uninsured women; the project has performed more than 5,000 mammograms to date. “In the ’90s we gave it to everybody … and that didn’t really work. What we’ve seen in the decade of the 2000s is improvements in survival for all stages.”
A high percentage of women who are diagnosed with breast cancer—30 to 60 percent, depending on the source—eventually develop it elsewhere, including the lungs and brain, according to the American Association of Neurological Surgeons. Part of the recent success in treatment stems from insight into the different pathways that breast cancer takes.
“Twenty years ago we didn’t have the understanding that we do today,” says John Lamond, M.D., associate medical director of Philadelphia CyberKnife, which is based in Delaware County Memorial Hospital in Drexel Hill. “Each cancer is different in different people, and there are now ways to do genetic profiles of the cancer. We are learning about certain breast cancers that have a propensity to spread through the bloodstream, and then attack them with targeted therapies to minimize collateral damage and maximize benefit.”
One such therapy is CyberKnife, which treats patients using a robotic stereotactic radiosurgery system. This noninvasive method treats tumors with high-dose radiation aimed precisely, from different angles, at small areas affected by cancer. CyberKnife has been used to treat brain, kidney and lung tumors, among others, but trials in the United States and abroad have yielded promising results for treating breast cancer prior to removing the cancer by surgery, according to Dr. Lamond.
Despite the improvements, not every story has a happy ending. In 2011, breast cancer was responsible for the deaths of approximately 39,500 women in the United States, according to Breastcancer.org, which is based in Ardmore. Although death rates have been dropping precipitously since 1990, especially among women younger than 50, statistics suggest one in eight U.S. women develop invasive breast cancer over the course of her lifetime.
Softer Side
In addition to game-changing technology, women afflicted with breast cancer are benefiting from an increased emphasis on treating the patient as a whole—mentally, emotionally, spiritually, etc.
Elyse Spatz Caplan was diagnosed with and treated for breast cancer in 1991. She was a stay-at-home mom at the time, and felt she needed to give back and “make it better” for other young women going through the same unpleasantness.
“It was 1991, not 2012, so it was hard for me to find another young woman who could resonate with my biggest worries in life,” she says. My mother and father had cancer, my brother had cancer, and I was the caregiver for all three. All of them passed away. Cancer is a part of my family’s life, so I wanted to get involved in the community and find some way to have a positive effect.”
For a time she served as program coordinator for breast cancer trials at Einstein Medical Center in Philadelphia, where she received her own treatment. Today she is director of programs and partnerships for Living Beyond Breast Cancer, a Haverford-based organization that provides a breadth of programs and services designed to empower women affected by breast cancer—in person, in print, through teleconferences, via the web, etc. The organization offers support on a variety of matters—medical-focused topics and quality-of-life issues alike—ranging from managing the side effect of treatment to rights in the workplace to sex and intimacy.
The organization also hosts an event called Yoga on the Steps, which is essentially a large-scale yoga class on the steps of the Philadelphia Museum of Art to raise awareness and funds for the cause. The 2012 event was held on May 20, with approximately 1,500 people lining the museum steps, among other attractions. The “incredibly moving and breathtaking” event has since expanded to Washington, D.C., and Denver.
“Having someone to say, ‘You are not alone’ is one of the biggest steps to recovery,” says Spatz Caplan. “We aim to make sure people don’t feel isolated. We feel that if women get more support, they can be more educated consumers of health care and feel confident when talking with their doctors and nurses so they can obtain the answers they need to make more informed decisions.”
Jackie Roth, a Center City resident who grew up in Fort Washington, writes a blog for Living Beyond Breast Cancer, documenting her thoughts, feelings and experiences in the aftermath of her July 2010 diagnosis of stage III breast cancer, at the age of 27. Like Stein, she too had a double mastectomy, and she found that writing about the highs and lows—and speaking about them, through her work with the Philadelphia affiliate of Susan G. Komen for the Cure—to be cathartic.
Missy Stein couldn’t agree more on the importance of having an outlet to vent one’s fears and frustrations. She was fortunate in that the hospital where she received treatment provided mental health therapy free of charge.
“There is no way anyone can go through the trials and tribulations of breast cancer without a really good therapist,” she says. “The people you love so much, you can’t tell them the deep, dark things going on inside your head. You tell yourself, ‘I may die, and what’s that going to be like?’ You go there.”
She does her part to give back, partly by sharing her story. For example, she serves as survivor fundraising chairperson for Komen Philadelphia Race for the Cure, which will be held on May 12, 2013—Mother’s Day—in Center City.
It’s been 10 years since Stein’s diagnosis—or at least her first diagnosis. Astoundingly, she received her second breast cancer diagnosis two years ago. Initial X-rays showed nothing, but subsequent MRI and PET scans revealed tumors on her breast bone and in her armpit. She now sees an oncologist every six months.
“When it comes back it’s not usually a good story,” says Stein. “I was shocked; I had had a bilateral mastectomy, so what else could I have done? I told them, ‘Listen, I will do anything I have to do except go through chemotherapy again. I’d rather die.’ They ‘zapped’ me five days a week for seven weeks, and here I am standing on the other side of it.
“I’m 46, and I’ve had breast cancer twice. I eat steak. I eat French fries. And Franklin Fountain (the Philadelphia ice cream parlor) is one of my favorite places on earth; it was my reward when I was going through treatment. I’ve decided I’m going to do whatever I want that makes me happy.”
Ironically, Roth was doing breast cancer research at the time of her treatment; she now works at Children’s Hospital of Philadelphia doing a post-doctoral fellowship in pediatric brain tumor treatment. She echoes Stein’s sentiment, adding, “I used to be a very active, very social, type of person who said yes to anything, and I had very little me time. After my diagnosis, I realized that I need time for myself, and I take a little time each day to make me happy. I don’t always say yes to things, and I’ve definitely become more independent.
“Probably the biggest change in me is that I feel stronger now.”
