It's 2001 and I'm 39 with breast cancer. My mother's diagnosis was ten years prior. Is it a coincidence? It's a little hard to comprehend as I undergo lumpectomy, mastectomy, chemotherapy, radiotherapy, prophylactic mastectomy and double reconstruction.
Mum's words ring in my ears: 'There have been some aunts with breast cancer.' I sit her down and draw up a family tree: five women out of 18 across four generations.
I meet with genetic counsellors and test negative for BRCA1 and BRCA2. But we are a 'high risk' family and of interest to research. We join the KConFab research program.
Tissue is gathered - prophylactic mastectomy - some tissue is stored. Ovaries removed - tissue is stored. While we answer many questions for them and donate tissue there are, unfortunately, very few answers for our family in return. It's a two-edged sword.
Having a genetic risk is hard. But being in the 'unknown' genetic group is harder.
As we have an unknown gene mutation sisters, aunts and daughters cannot be tested. How do they make decisions about their risk with so little information?
It is 2006 and five years have passed. I quietly celebrate this milestone. Two months later my non-identical twin sister is diagnosed. That's makes it six out of 18 women. Who will be next? There is no test for them. For my mother, twin sisters and I, our choices are trying to stay alive.
Our teenage children start asking questions. Will their children get breast cancer? I silently think - what about you? When should they start surveillance of their risk? What will it be like for them in their 20s living with this shadow of breast cancer? Could I have contemplated prophylactic mastectomy so young?
I'm told that there'll be answers in the coming years. Even if our family's gene mutation is identified, the question remains. How do we prevent the breast cancer occurring?
--Heather
