My name is Heidi and this is my story.
My story is a somewhat long one and has taken me ages to write despite being a member of Pink Hope for quite a while. I am 42 years old with an 11 year old son and 6 year old daughter and have my own private practice as a Clinical Psychologist. I am of Ashkenazi descent and am BRCA2 positive, with a6417delT mutation. I underwent bilateral prophylactic mastectomy with immediate reconstruction on 11 July 2012.
BRCA2 has impacted many members of my family. My father’s oldest sister passed away from ovarian cancer and carried the gene fault. Over 8 years ago, two of my first cousins living in South Africa (daughters of my father’s youngest sister) were diagnosed with breast cancer ages 39 and 41, within a few years of each other. They both had mastectomies, chemo, radiation and thankfully today are well. They too tested were BRCA2 positive. When I heard that BRCA2 was “in my family” I ensured that I had regular ultrasounds and mammograms. I often had the odd pain in the right breast and the thought would always cross my mind: is this it, have I got breast cancer? But I chose not to get formally tested for a few years, I focused on my children, husband and work. It was obvious that I was not emotionally ready to go down the testing path and contend with the possibility of also being BRCA2 positive.
Fast forward to July 2008 when my father aged 76 living in South Africa became very ill and was diagnosed with pancreatic cancer. He underwent major surgery, had chemo, radiation and for two years fought bravely. I travelled often to be with him while he had treatment and in his last six weeks of life I made three trips to be with him but sadly I was on the plane to see him when he died.
At the end of 2009 I had a nagging pain in the right breast and my GP sent me off to the breast surgeon. When he heard about my two cousins, and that I was of Ashkenazi descent he recommended that I have genetic testing. It took me a few months to finally book the appointment at St Vincent’s Hereditary Cancer Clinic but I knew I now had to be tested, my father’s illness was progressing. Once I was tested, I knew in my heart that I would be positive, and so when I received the result, I was not that surprised.
But the emotions were huge, my husband was shocked, but I was adamant that surgery would be my only option. In my mind my breasts were dangerous, my enemies that could cause havoc if I did not have surgery. This decision was strengthened while I watched my father dying in hospice, I knew that I never wanted my children to see me struggle with cancer and that it would be the easier and only option to lose my breasts and ovaries than wait for cancer to develop.
At this time, I encouraged two of my other first cousins living in South Africa (their sisters had had the breast cancer) to be tested. They had surprisingly never been tested and I was quite insistent that they could “not keep their heads buried in the sand” and that surveillance was not enough. They too were positive for BRCA2 and they both had bilateral mastectomies with immediate reconstruction in 2011. Unbelievably their mother, has been in perfect health, she is 79 and is certainly quite fortunate because we assume she too is positive. My father’s brother has a history of stomach and prostate cancer but he has never had genetic testing. We assume that I inherited the BRCA2 gene from my father even though he was never tested. My brother was tested a few months after me, he was negative, and although I was so relieved for him I also felt a bit cheated. Why me was the question ? But knowing that there is never an answer, I had to put this thinking to rest.
Losing my father was devastating, I had lost my mother suddenly 12 years before. My father knew before he died that I had tested positive, and he encouraged me to have surgery. He would have been an amazing emotional support during my journey but I do think he would have struggled with the guilt of passing on the gene to me.
My doctors encouraged me to first work though my grief and loss once my dad died, they highlighted that I had to be in the right emotional space when I had the surgery. Initially I had decided that I would have the oophorectomy because surveillance is so unreliable, it was all booked and then I got cold feet. I was worried about all the side effects, not just being catapulted into menopause and having hot flushes but also the bone density, cardiac and cognitive changes that can present with surgical menopause. So I decided that if I had the mastectomy first. I would have more options in terms of having HRT after the oophorectomy.
I explored all the reconstruction options and was clear in my mind that I wanted immediate implants and not flap or expander options. I wanted one hospital admission and wanted the process to be quick. Not many surgeons do immediate implants but I was fortunate to find a plastic surgeon who specializes in this option. I was scheduled for my surgery in April 2012, had everything in place, my kids and husband schedules were organized, my clients and private practice were on hold and I was ready. But one week before, I got a shocking chest infection and so the surgeons cancelled the surgery as they felt it was too risky. I was relieved, I clearly was not ready and needed “an out” to give myself more time emotionally to prepare.
The surgery was rescheduled for July, I threw myself back into my work and carried on with our lives but knew that when July came that was it, there was no getting out of the surgery. Probably my biggest fear was getting off the table, I joked with my doctors that I did not care about what I looked like, I just wanted to wake up from the surgery. I had prepared my kids for the surgery, my son is very mature and understood exactly what the surgery was for and would entail. I told my daughter I was having an operation on my chest “to keep mummy healthy”, she still does not know exactly what the surgery was and I will only explain this to her when she is an older adolescent as I do to want her to have any anxieties or qualms about her body.
The morning of the surgery was surreal, I remember getting up and going to the hospital feeling a sense of dread in my stomach, the day had arrived, there was no going back, it was time to say goodbye to my breasts that I loved, that my husband loved, that had fed my children. But these breasts could potentially make me sick so my attachment to my breasts at this time was indifference. I had had months to process losing them, and did not feel a sense of loss. But I still felt like I had no control, my thinking was that I was being forced to have surgery but I knew that if I didn’t that I would have to live with ongoing anxiety every time I got a pain in my breasts and that I would never forgive myself if I got cancer and hadn’t had surgery.
My surgery was over five hours long, I remember waking in recovery thinking thank goodness I am alive, but within in an hour of being in the ward I knew something was wrong with my right breast. It was in excruciating pain and was getting redder and more swollen as the minutes went by. I asked the nurse to call my PS and eventually when I was beyond distressed, 3 hours later she finally did. He came straight away and knew immediately when he saw my right side that I had a hematoma, a bleed. So they took me straight back to surgery for another two hours to clean up the bleed, which was under the implant. So two aesthetics in one day was not what I planned but once the complication was sorted I could get on with my recovery. I used to often read through the comments on the Pink Hope forum while I was recovering and it helped normalize my own experience.
So it is almost nine months since my surgery, it took about 10 weeks for me to feel like my old self. The right side took ages to settle down, there was necrosis in the subcutaneous tissue because of the extra trauma to that side from the complication, but luckily that has settled down now. My recovery was initially slow, as I am allergic to many medications, I could only take panadol for pain but got through it with the support of my amazing husband. I had to learn to be patient with myself and not expect myself to feel 100% in the first few weeks. I got by watching loads of TV downloaded to my iPad.
The pathology results showed that there were no precancerous cells, what a relief, but for a second I did think, what a waste, cutting healthy parts off my body. But then I remembered that that was why I had opted for the surgery because I never wanted to be in a position where there would be any cancerous cells. Still have to have the oophorectomy, planning to do so mid next year. In the back of my mind I do think about my chance of getting pancreatic cancer, like my father, so I plan to have regular scanning to check for any changes to my pancreas.
Every day I am grateful that I was given an option, a choice to do something to protect myself and my family from my potentially getting ill.
I never wanted my having BRCA2 to define me or my life, many people who hear my story say “you are so brave”, but I think more than anything I was sensible, I had the knowledge and I had the choice to use it. Hopefully, by the time my children will be tested, there will be many more options available to them. But in mean time, I believe I have to be proactive and help educate as many others, particularly in the Ashkenazi community about heritable cancers.