A medical file several inches thick is a daily reminder of the choices I have made over the last two and a half years since testing positive for the genetic cancer gene BRCA 2.
Previously hereditary conditions, especially those causing breast and ovarian cancers, were only something I read about in women’s magazines; sympathising with the young women faced with life changing surgery. I had never envisaged that I too could be at risk. Although my father had lost his mother, three sisters and a brother to cancer, all at relatively young ages, I thought I was okay as it wasn’t in my mother’s family.
A cousin suffering from ovarian and bowel cancer was to become the lynch pin that helped unravel the family’s genetic history. After losing her mother to ovarian cancer her own cancer cells helped reveal the BRCA2 gene in the family’s DNA; a finding that opened the floodgates for the extended family to be genetically tested should they choose. In my immediate family widespread genetic testing was not offered until our father had undergone the test. His positive result was a blow to us all.
Research by my sister and cousin revealed Jewish ancestry in the family, dating back to my great-great grandmother. A Jewish connection is regarded as significant as the BRCA gene is known to be particularly strong in the Ashkenazi Jewish population. While I may not have lost a parent to cancer it was well known that a number of female relatives on my father’s side had succumbed to the disease.
As one of five, my siblings and I all had a 50/50 chance of carrying the gene mutation. As my sister had already been diagnosed and successfully treated for breast cancer at 52 she was particularly adamant that we use the information to safeguard against the disease. The support of my sister and cousin was invaluable, but ultimately the journey is a solitary one. No one can make these decisions for you. I was a fit and healthy 48 year-old and the idea of prophylactic surgery was scary.
I read everything I could on the subject, the horror stories, the new drug trials and the latest advancements in cancer treatment. As a mother of three my over riding emotion was how could I face my children if I had known I was at risk and not done anything about it. Ovarian cancer or as I think of it “the silent assassin” was my main concern. I had been having regular mammograms since the age of 40, but ovarian cancer is much harder to detect. In many cases detection is only found in the late stages of the disease.
In April 2010 I had my first surgery, a prophylactic oophorectomy, the removal of the ovaries and fallopian tubes. The pathology report was a wake up call and justification for my actions as cancer cells were detected in one of the fallopian tubes. Early menopause paled in comparison with the thought of cancer. Initially I had intended to have only the one surgery as I felt ovarian cancer was my greatest risk and my childbearing days were over. However, a chance comment by a doctor made me think that while my risk was reduced I was still at higher than average risk for breast cancer. A good experience in the public health system encouraged me to put my name down for further surgery while I investigated my options.
One of the best things you can do for yourself is be well informed. By having a variety of information at my fingertips I felt in control of the process and was able to take ownership of the situation. Doctors respected my views and the old adage “if you don’t ask you don’t get” came into play when I was able to have both a general surgeon and plastic surgeon involved in my double mastectomy and reconstruction. Time was also on my side. I was able to remain in the system while getting my head around the idea of removing healthy tissue in the possible advent of contracting cancer. Ovaries were buried inside the body, but breasts were visible, feminine lumps that signified us as women. How would my husband feel about me sexually if I underwent a mastectomy?
My inner turmoil was evident in the series of clinic visits where high blood pressure readings put any idea of surgery on hold. While my head was saying “yes” the uncertainty of my situation was causing a physical reaction that I didn’t seem to be able to control. My “white coat” syndrome was shown for what it was after a 24-hour blood pressure monitor worn at home showed normal readings.
On Valentine’s Day 2012 I had the call up for surgery. I was relieved to have finally made the decision and felt positive about what I was doing. A young nurse’s comment that I was in to “have my breasts off”, brought a wry smile and a visual picture in my head of saucer like holes left where my lady lumps used to be. Thankfully that was not the case and I awoke to find that I still had breasts. My initial pathology report was good, with no cancer cells detected. However, a second look at the specimens found a small number of fast growing cells in breast tissue. On phoning with the results my doctor congratulated me on making the right call and putting to rest any doubts I may have had in going ahead with the surgery.
I had a five-day stay in hospital and left with both chest drains removed. I had told a small group of girlfriends so had a support network while I underwent my six-week recovery period. My changed shape has taken some getting used too, but the surgical team did a great job. In some ways I’m more in proportion than I have ever been, but the surgery does change you. In a way my chest feels separate from the rest of me, but it’s a change I’m more than happy to live with. My husband also approves of the new look.
Temporary implants remained until July this year when I had a second operation to replace them with permanent silicone implants. My six-week post recovery phase is now over so to celebrate I’ve bought some sexy new bras.
I am pleased to have this journey behind me, but feel incredibly luck to have been able to take it. Knowledge is power so use it.