To know or not to know?
When I was 35 I went to my GP of many years with a breast lump the size of a ten cent piece. He knew my aunt developed breast cancer in her 40’s but still assured me “it was nothing to worry about” without ordering any tests. I never thought to seek a second opinion because I didn’t feel sick, I wasn’t tired and this man had looked after me for over 20 years. I trusted his opinion. Months later I felt a lump under my arm and went to the local GP who found I had breast cancer and it had spread to the nodes under my arm.
At the time of my mastectomy and 12 doses of chemotherapy, I was a single mother with daughters aged 5 and 7 and I’m an only child. I had to hide my fears and feelings from my daughters and my mother who was terrified I would die like her sister.
For 6 months the chemotherapy was injected undiluted into my arm at my surgeon’s office, with no opportunities to meet other young women enduring the same life crisis and no one to offer me hope and support.
Eventually I was referred to an oncologist who suggested I be tested for a breast cancer gene mutation. Both my mother and grandmother hadn’t had breast cancer but mum’s 2 cousins and only sister had developed breast or ovarian cancer in their 40’s and all were deceased. Thinking I was helping research and never imagining I would have a mutation, I consented and was told my test results should take 12 – 18 months.
After 2 years I still had no mutation test result, but I had developed a cyst in my remaining breast which showed on my mammogram. My oncologist said “don’t be concerned”.
Finally, I received a call from a genetic counsellor who wanted to see me. It had taken 3 ½ years to find out I had the BRCA1 gene fault mutation. The news hit me hard. The chances of developing cancer in my remaining breast and ovaries were not my only concern. I was worried my daughters may have inherited the gene mutation from me and what was the best way to tell my mother and cousins about the result, if they wanted to know?
I discussed prophylactic (preventative) mastectomy with my oncologist. As well as the cyst, I now had a swollen internal gland. The oncologist said “wait 6 months and then have another mammogram”. Thankfully the surgeon knew it was cancer and it had spread to my internal nodes.
I now had a fiancé, 5 kids, I was working, we’d just moved further out of Melbourne and I was coordinator of the young women’s breast cancer support group I’d founded 4 years earlier. It was definately easier dealing with my diagnosis this time because of all the support, experience and knowledge I could get and share with others in the group. Some of these women had a breast cancer gene mutation and understood first hand about the guilt, worry and fear I was feeling.
Over the next 13 months I had a mastectomy, 8 doses of chemotherapy, 30 doses of radiotherapy, my ovaries removed and bi-lateral breast reconstruction. Had I known about my gene mutation before I found my first lump, I know I would have been treated differently by health professionals and I would also have taken preventative measures to reduce my risk of developing breast cancer, but there is also the psychological side to knowing and I would have had to live with that too. I truly believe that if I’d known in my 20’s that my life now would be completely different but not necessarily better, I may have made different life decisions. I’m still yet to decide when to tell my daughters because I know that the information I need to share with them may mean they have to make some painful decisions and I will be the cause of that pain.
Tanya Wilson, diagnosed aged 35, Victoria
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To know or not to know? 
