By Eden Spodek
After months of agonizing over whether or not to make my story public, I’ve decided to come out as a woman who has decided to share something very private. Especially since so much of my life has become public over the past 20 months with the launch of my blog. This story is a very painful one and one I’ve only shared with close friends. Between 2002 and 2005, I had a double mastectomy, reconstruction and a complete hysterectomy. Here is my story…
Saturday, May 24, 2008 marked the date of my eldest son’s Bar Mitzvah. There was a time when I wondered whether or not I’d live to see the day. For me, it was a day for celebration on two levels.
Eight years ago I learned I had a genetic mutation known as BRCA1. According to current statistics, I had close to a 70% chance of developing breast cancer and a 40 % of developing ovarian cancer by age 70. The odds of it happening sooner than later were also staggering. It was the beginning of a difficult journey that I believe helped prolong my life. Otherwise, I feared I wouldn’t have been around to watch my children grow up.
Why did I get tested in the first place?
My mother was diagnosed with early-onset breast cancer at the age of 32 and died when she was 37 (I was 15). There was also a history of breast and ovarian cancer in her father’s family. I am also an Ashkenazi Jew (a high-risk group with 1 in 44 women having a BRCA gene.) Those two factors made me eligible to for genetic testing when the criteria was more stringent than it is today. (For the first time in Canada, Jewish women regardless of family history will be offered the genetic test for free*.)
I also had some early warning signs, excellent physicians and started having mammograms when I was 28. When the first familial breast cancer practice opened up in Toronto while I was in my early 30s, my gynecologist urged me to meet with Dr. Paul Goss, a medical oncologist specializing in familial breast cancer research. I think I had just given birth to my eldest son. I was offered genetic testing early on but knew I wanted another child and didn’t want the results to get in the way of my decision. I waited almost two years after my second son was born.
I suspected I already knew what the results would be and I wasn’t ready for them to be confirmed. Once they were and I was told I had the BRCA1 gene, I wasn’t surprised but I’d by lying if I said I wasn’t upset. I was upset enough to gain more weight than I had gained during pregnancy. (I lost 30 pounds six months later and kept if off until I struggled with my body image during the breast reconstruction process.) Through the familial breast cancer clinic, genetic counselors and social workers were at my disposal. I spent a lot of time studying the genetics issues. I had lots of decisions to make:
• do nothing,
• enter a more intense screening program,
• take Tamoxifin for five years which at that time was more experimental, or
• have prophylactic surgery – an option I had sworn against since I’d heard of high-risk women opting for it years earlier.
After doing some heavy soul-searching and scads of research, I chose more screening including regular mammograms and MRIs as part of a study. I also tried Tamoxifin. After 3 weeks and feeling like I’d aged 20 years, I nixed the experimental drugs. I hated the MRIs yet I refused to take the sedatives they offered during the procedure. I also hated waiting several weeks for results – results that were often unclear or false positives – that often required repeating. I also had an area described as “ropey” on the left side of my left breast. Doctors performing clinical breast exams were always concerned. I kept having doubts about the efficacy of the screening. I also had spots called calcifications – another warning sign of things to come.
Eventually, prophylactic surgery seemed like a more viable option. Dr. Goss was known for being aggressive when it came to recommending prophylactic surgery as prevention to otherwise healthy women who may or may not develop breast cancer. And, with early screening and detection the odds of survival were increasing. Except for one thing, he thought women with BRCA 1 or 2 seemed to get more aggressive cancers and even early detection wasn’t always enough.
So, he sent me on a journey.
I spoke to every leading breast cancer specialist in southern Ontario. Each one had a different area of interest and a different perspective. Male doctors also seemed more in favour of surgical options than their female counterparts. I also spoke to specialists in Eastern Canada and Chicago.
While on my journey, new information emerged about the relationship of ovaries and breast cancer. Specifically, removing them and/or tying fallopian tubes would not only decrease the chances of ovarian cancer but was also found to decrease the risk of estrogen-receptive breast cancers. My childbearing years were over and the thought of removing invisible organs instead of my breasts seemed like an easier option. I started asking my gynecologist questions like “If I remove one ovary and tie the other tube, what would my risk reduction be?” She referred me to one of the two top gynecological oncologists in the city.
Timing is everything.
A mere two weeks before my appointment, a well-supported study was released comparing two groups of women with BRCA1 who opted for prophylactic surgery. There was a staggering difference in the occurrence of ovarian cancer for those women who removed just their ovaries vs. those who removed their ovaries and had a hysterectomy. The surgeon made a convincing case for the latter. I left the office in tears and was told I should have the surgery within two years because I was two years away from the age when the cases of ovarian cancer in BRCA women increased exponentially. Ovarian cancer is very difficult to detect, particularly in the early stages and difficult to cure.
After much research, anxiety and introspection, I decided to start what would later become a three-year surgical misadventure, with an oophorectomy and hysterectomy. I had just turned 40, and a young 40 at that. The thought of premature aging and losing my breasts was daunting and scared the you-know-what out of me but I was married with two young children and the though of them living without me was far more frightening. I knew what it was like to grow up without my mother and couldn’t bare the thought of my kids growing up without me.
Besides with laproscopic surgery, the procedure was supposed to be quick and the recovery relatively easy. Unfortunately, things don’t always go as planned. I started bleeding uncontrollably. They had to cut me open after all. I almost bled out on the table. When I woke up, I was left with huge stretch marks (I never got any during pregnancy so they were quite a shock), anemia, chronic lower back pain and frequent bladder infections for the next six months. A 3-week recovery period turned into a three month absence from work.
Back to the boobs…
I continued with the MRIs, mammograms and clinical exams. After getting the all clear several times, things changed. I was diagnosed with a fibroid adenoma. I had a small benign spot on my right breast that was indicative of a future malignancy. I had two needle biopsies – the first one inconclusive, the second one seemed all clear. Regardless, I couldn’t stand feeling like a sitting target. I was ready to tackle the next round and have a bilateral mastectomy.
Next I had to interview and be interviewed by the surgical team. They needed to make sure I was comfortable with my decision and had done my research. It didn’t take much to convince them. The plan was for immediate reconstruction with expanders for six months to be replaced with cohesive gel implants.
Unfortunately, things didn’t go as planned this time either. My incisions didn’t heal properly. The expanders had to be removed two weeks later. I went from a double DD cup to being flat as a board for eight weeks. I wanted to end up a B or small C. Instead I wore prosthetics for several months until I was healed enough to have the expanders reinserted. It was almost two years before my breast reconstruction was complete. For most women it takes between six months and one year to complete the process. The good news was they didn’t find any malignancies during the post-op biopsy of my breast tissue.
Along the way I had a supportive husband and family, joined a support group and spent a lot of time as part of an online community for high-risk women called FORCE as “ElisaS” (a hybrid of my real name). I met several other women in real-life and online who were dealing with similar issues. Out of the 10 women in my real-life support group, 5 of us have remained close over the years. Of the 5 of us, only one woman hasn’t had any preventative surgery. She was recently diagnosed with breast cancer. Fortunately, it was caught early but it may have already spread to her lymph nodes. She’s awaiting her prognosis.
Why didn’t I do this sooner?
I was concerned about my privacy and that of my family. I needed to wait until they were comfortable with my decision to go public. I believe there is a stigma attached to women with a BRCA gene mutation who choose surgical prevention. We’re caught between a bit of a rock and a hard place because we’re treated sort of like we have breast cancer and sort of like we don’t. We’re still pioneers as far as the medical community is concerned too. I’ve experienced adversity as a result of my prevention decisions and I am concerned about whether or not people will treat me differently as a result. It’s been weighing on me for a long time.
After sharing my experience with Susan Reynolds for months, Katie Delahaye Paine at mesh last week, and conversing with Mathew Ingram on twitter about transparency in the context of the story that broke on the front page of Canada’s national newspaper, The Globe and Mail (also his employer) last weekend – coincidentally, on the same day as my eldest son’s Bar Mitzvah – I knew it was time to tell my story.
I decided the benefits of sharing my experience and possibly helping other women outweighed the costs. I hope I’m right.
*NB Dr. Steven Narod, holds the Canada Research Chair in breast cancer and director of the familial breast cancer unit at Women’s College Hospital in Toronto. He is instrumental in the program being offered to test Jewish women for the BRCA gene mutations in Canada. I consulted with him and genetic counselors on his team during my journey.