Reprinted with permission from BRCAStrong, a 501(c)(3) organization dedicated to empowering women with genetically predisposed reproductive system cancers, commonly known as “Previvors.” Founder and CEO Tracy Milgram-Posner has been featured on the podcast in Episode 002 discussing this wonderful organization.
I was privileged to attend BRCAStrong’s “Music of My Soul” retreat in Fort Lauderdale, where I met fellow Previvor Amy Estridge. We quickly discovered we had a connection to Toledo, Ohio as it is my hometown as well as her mother Sarah’s current city of residence. Not only was Sarah diagnosed at age 29 like me, she volunteers at The Victory Center, a local center dedicated to the wellness of cancer patients. The Victory Center offers services such as support groups and wig banks to cancer patients at no charge. Sarah also works with my best friend Maria’s mother. Since I have met Sarah, I really look up to her as an inspiration and I hope she continues to tell her story!
Sarah tells an amazing story of her breast cancer journey, which impacted her family forever, as she tested positive for the BRCA1 genetic mutation. If you would like to contact Sarah, please email me!
~K
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It was 1984 and I was 29 years old and pregnant. I discovered a lump in my armpit that propelled my entire family onto an amazing journey with cancer, treatment, tragedy, discovery, and prevention. It is with gratitude for my survival of nearly 35 years and I hope to encourage young persons today who are experiencing similar issues.
“You’re Too Young for Breast Cancer”
In the 1980s in my hometown of Toledo, Ohio, people only whispered about “The Big C” and the only talk about breasts was naughty schoolyard stuff like, “the bigger the better the tighter the sweater.” Yes, it was the heyday of Big Hair and Big Boobs. (This was long before focus turned to being “bootylicious.”) Common thinking was that a lady who had lost even one breast would feel like “less than a woman.” That is one reason women did not want anyone to know.
However, when Betty Ford and, later, Nancy Reagan revealed their battles with breast cancer the walls of shame and secrecy began to crumble. But Betty and Nancy were “old” and breast cancer didn’t strike women under age 40. Besides, it did not run in my family. I soon found out I was wrong about both these notions.
Breast Cancer and Pregnant at Age 29 (nearly 35 Years Ago)
I was in my seventh month of pregnancy when I felt a lump in my left armpit while showering. While this was troubling, it was virtually unheard of for such a young person to have breast cancer! I rushed to my OB/GYN and he said we should “watch” the lump for a while. At my regular appointment two weeks later I told him that it hurt. Even though the mass was “probably nothing” he decided I should go to the hospital for a biopsy. The gynecologist numbed the spot with a local anesthetic and carved away at my armpit. “This shouldn’t hurt too much,” he said. I wasn’t sure what “too much” meant but it hurt like Hell. The next thing I remember was gazing up from the operating table with my husband’s face peering over mine. He said that doctors were probably going to have to remove my breast. The tissue had tested positive for cancer.
This older physician urged me to follow the pregnancy through to full term and then seek treatment for myself. What followed was a three-day whirlwind of insurance verifications and second opinions. My husband and I learned that the cancer — located at the site of lymph nodes and having been cut – could quickly spread. Also, it was assumed that the tumor was being fed by pregnancy hormones. And although premature babies were at a greater risk back then I was into my eighth month of pregnancy. The odds were better for the baby than for me at that point.
So six days after the biopsy I had a Cesarean section delivery along with a modified radical mastectomy in one emergency “tag-team” operation performed by my gynecologist and a surgeon. (A few months later the new lumpectomy method of treatment became public and is now the norm for cancer patients. I was sorry I had missed out on this less-invasive method, but I would surely not have been a candidate for it anyway.)
To remove the baby as quickly as possible the C-Section was performed in a large vertical slash, rather than the modern horizontal “bikini cut.” Cutting my stomach muscles from pubis to navel resulted in a painful recovery. However, there had not even been time to discuss these options and I know that getting the baby removed quickly was the top priority.
We did not know the baby’s gender but were delighted we had our second precious little girl. She was completely healthy and weighed a whopping 8’4.” Of course, I could not breastfeed her, as I had nursed her sister. Her Daddy did the night shift feedings so I could ready myself for further treatment if needed.
The second biopsy detected cancer in two lymph nodes. Therefore, six months of chemotherapy was recommended to begin as soon as possible followed by six weeks of radiation to my chest wall.
However in Toledo in 1984, the only source of support was provided by The American Cancer Society’s Reach to Recovery Program which brought volunteer mastectomy veterans to the hospital beds of new patients to provide information and support. My perky, attractive visitor gave me a temporary cloth prosthesis to pin in my bra until I could get a weighted silicone model. The volunteer confidently admitted she had only one breast and she thought she looked fine. She surely had more important things to do than feel sorry for herself and I decided this would take the same approach.
The following month I began chemo (Adriamycin “The Red Devil” by IV and Cytoxan pills). I did experience some nausea but was able to carry on with my job and busy life. To treat me as aggressively as possible, the oncologist continued increasing my dosage until it became intolerable. I credit chemo for saving my life and today I am so grateful that I had the state-of-the-art treatment available all those years ago.
My best friend, a nurse, later said she considered my chances of survival low and that I was a “Stage 3.” I am probably lucky there was no Internet to provide sobering statistics. I barely even had time to talk with my oncologist. Back then, oncology waiting rooms were overcrowded and there were clearly too few physicians and resources for the volume of cancer patients. I felt that there must be much more gravely ill people in life-and-death situations who were in greater need of the physicians’ time. There were no specialized nurses or therapists or social workers who encouraged us. And there were no other young women with breast cancer.
Next, I had radiation therapy on my chest wall five days a week while the babies took afternoon naps at daycare. First, technicians tattooed my chest with black dots forming a permanent constellation to guide the treatment. This felt like they shoved a ballpoint pen into me and I would never dream of getting a tattoo after that pain. Then they photographed my slashed chest and joked, “Don’t worry we are not going to sell these to Playboy (magazine).” I made a self-deprecating comeback about how I was better suited for PlayGIRL and broke down crying from the pain and self-induced pressure to be cheerful. It’s not surprising that the techs told the radiologist I needed counseling. And I am very glad they did.
As radiation progressed, I developed a painful poker-chip sized burn on my drainage tube area, resembling a port wine birthmark. However, compared to chemo, radiation was easy peasy.
Concerning reconstruction, my husband did not want me to undergo any more surgery and I thought this was sweet. My surgeon felt breast reconstruction was absolutely foolish claiming it would make it harder to detect a recurrence. Back then, plastic surgery was mostly reserved for the rich and famous and there had been a lot of negative publicity about silicone breast implants causing all kinds of illnesses. So I moved on effectively with only one breast for nearly 20 years. Fortunately, I can honestly say that having only one breast did not affect my intimacy with my husband.
Losing my hair at age 30 was more upsetting. I had a couple of wigs that were so massive that I felt like a vintage country western singer. Today, I volunteer as a wig fitter for a wonderful cancer recovery support organization in Toledo called The Victory Center. (Thankfully, 21st Century wigs are so much more natural with darker roots and multifaceted colors throughout. It is a true joy to give other survivors the “lift” that comes from feeling good about your hair.)
Ovarian Cancer Takes My Sister
But hair seems like a petty concern compared with what my younger sister faced in 1996. Laura’s abdomen suddenly ballooned like a pregnant belly and she was diagnosed with a form of ovarian cancer. She battled the disease for 18 months, hoping to live for her 12 and 14-year-old daughters, husband and the rest of us. Although Laura had abdominal surgery the tumors were too advanced. Even participation in a clinical trial did not save her. Our family naively thought she might beat her cancer because I had survived 12 years earlier. However, ovarian cancer is more difficult to detect and was nearly impossible to treat. By the time it was detected it was almost always too advanced. The entire process was a nightmare for all of us, particularly for her adolescent girls. She died at age 39.
The BRCA Revelation
Some years later, I began having “female problems” involving ovarian cysts. I was not familiar with genetic testing but my new younger, female OB/GYN noted that my father, of Ashkenazi Jewish descent, had recently died of lung cancer following an earlier bout of prostate cancer. She referred me for genetic testing so we would know what genetic cards we had been dealt.
I could present three first-degree family members with cancer – Dad, Laura and me. So insurance covered the testing and it showed I had the BRCA1 mutation. With the new knowledge of my elevated breast and ovarian cancer risk, and to deal with the cysts, I decided to have a total hysterectomy.
As for breast cancer, I had gone more than 20 years cancer-free so my doctor thought I was probably “out of the woods” in terms of metastasis from that incident. However, the risk of a new occurrence in my right breast was a bigger concern. So this time my surgery included a hysterectomy, mastectomy, and reconstruction of both breasts in one triple-whammy operation. I had breasts implants inserted that would be gradually inflated to stretch my chest skin and would later be replaced by more permanent ones.
BAM! I awoke with two breasts. As the plastic surgeon gradually expanded them during biweekly appointments the temporary inserts seemed gigantic. But when I received the permanent models in a simple outpatient procedure, they were smaller and better suited for my small frame. I did not have nipples made so I could confidently, modestly and “bra-lessly” wear light-colored blouses and t-shirts. And, to my surprise, the plastic surgeon removed the tattooed dots and the ugly purple scar from the burn. While my new breasts are somewhat hard and feel like two half grapefruits, the plastic surgeon assured me I will someday have the perkiest breasts in the nursing home.
I like having two breasts again even though I had never considered myself “half a woman.” However, nothing compares to the peace of mind of significantly reducing my risk of breast and ovarian cancer.
BRCA and the Next Generation
Since my sister Laura’s death, my siblings have had genetic testing. My brother was found positive for the BRCA1 gene. We assume Laura had the gene so we know that three of us five siblings received this unwanted inheritance. In, fact we knew little about my father’s family and even less about their medical history. I was actually dead wrong about having no family history of breast cancer. I was just the first we knew.
Testing also found that both my younger daughter and Laura’s younger one carry the BRCA1 gene. (Thankfully, the two older cousins did not.) However, these two feisty younger cousins are determined to do all they can to prevent cancer.
Allison began bravely and proactively informing herself of her options. In 2009, I traveled with her to Orlando for the FORCE Conference (Facing Our Risk of Cancer Empowered) to learn more about “Previvor” issues. The room was filled with more than 500 people from throughout the world. Attendees included all races, religions and ethnic backgrounds and even a few men. The keynote speaker said we are all linked to a common ancestor in whom the genes had mutated. So we BRCA carriers are not only distant relatives of Angelina Jolie (let that sink in!). We are all literally “family.”
About eight years ago, Allison had a prophylactic bilateral mastectomy and reconstruction. She recovered beautifully and now has a darling two-year-old son. Her plan is to eventually undergo a prophylactic hysterectomy as well.
My daughter Amy — born the day of my first mastectomy –grew up with breast and ovarian cancer on her radar screen. At age 11, she was very shaken by her aunt’s struggle and death. Several years later, Amy donated her hair to Locks of Love for a wig for a survivor. And recently, she underwent her own prophylactic bilateral mastectomy and reconstruction. Today, Amy is a practicing psychologist in Southeast Florida and involved with BRCA Strong. I know she will be an inspiration to survivors and other Previvors alike.
During Amy’s convalescence cousin Allison commented, “It’s great that my mom and you blazed the trail for us. It probably allowed us to be Previvors instead of cancer victims.” To reframe our experiences as helpful to the next generation is a great comfort and brings some meaning to our journey. I believe that with the advancements and support available today, you too will be alive and encouraging others 35 years from now.
