It’s hard to believe that it’s been 5 years since my sister died. Some days it feels like only yesterday but other days it still seems so fresh. Yesterday was a hard day and I really wanted to pick up the phone and talk to her – she was always the first person I told anything to and she was always willing to listen. So because I’m undergoing treatment and wanted to write this out at some point this seems like a good time to write everything out in terms of my BRCA journey – a lot of this has been covered in other posts but this is for me.
I found out I had the mutation 2 days after my sister died of breast cancer – she died only 6 months after diagnosis and undergoing chemo and radiation treatment. So honestly, for me, unlike many others the news actually wasn’t devastating – in fact, I mostly felt sorry for the poor genetic counsellor whom I had never met. I went to the appointment with my mom and dad and my poor mom freaked when she heard the news – she had just lost one daughter and was being told that her only other child also had this mutation was a little much too soon. Plus it didn’t help that I had previously met with a genetic counsellor but didn’t qualify for testing – even though all the female relatives on my dad’s side (my grandmother and aunt) had breast cancer and died. My dad could have been tested but never got around to it until my sister was diagnosed and he tested positive as well.
My story, in terms of the BRCA-1 mutation, starts in 2011 when my Dr. asked about my family history of cancer. My maternal grandmother had breast cancer go into remission and then had a recurrence and died from complications when I was about 12 years old, so I don’t really remember much. My maternal aunt died from breast cancer when she was forty – diagnosed when she was 36, went into remission and by the time it was discovered again it had spread to most of her body. Based on this history my Dr. suggested meeting with a genetic counselor. I met with the counselor in 2011 with my mother as she knew her family history (I wasn’t aware of the cancer history in her extended family) and the dates for my dad’s side of the family. Because there weren’t enough female relative on my dad’s side I didn’t qualify for testing – but go figure my mom did for another genetic mutation (not BRCA). So I didn’t give it another thought – but fast forward to July 2012 – my sister calls to let us know she has breast cancer at the ripe old age of 32. When I heard the news I was upset – but it didn’t seem too bad, most breast cancers are very treatable. However, when we arrived she told us that it was inflammatory breast cancer – which is rare and usually not diagnosed until at stage III or IV. For Nicole it was already at stage IV and was in her lungs, bones, brain and liver. Treatment started immediately – I won’t talk about that here, but suffice it to say that it was extremely aggressive and she died 6 months after her diagnosis. During her treatment she tested positive for a BRCA-1 mutation, they tested my dad (he was positive) and then I received my positive test result.
After seeing what Nicole went through I knew that a mastectomy was in my future, but the timing was up in the air. If my mom had had her way I would have been in the operating room as soon as we got the positive test result. But I had just gotten married less than 2 weeks before this result, my husband wasn’t there (he needed to return home for work and his mom was in the hospital), and this was definitely a decision he needed to be part of. So we waited until we could get in to meet with the Dr. at the high risk breast cancer clinic in Ottawa. My sister died in early January and this meeting was in the spring. Now remember this is a prophylactic surgery so they have no rush to get it done – I’m not sure what would have happened if they could have done it right away. Anyways based on that conversation and talking it over with my husband we decided that I would put my name forward for surgery in the Fall/Winter and we would try for a baby during that time if I got pregnant great but if not I would have the surgery – with a mammogram and breast MRI during that time. Of course, when they called with the surgery date I was about 8 weeks pregnant so no surgery. And since that time I’ve pretty much been pregnant or breastfeeding – so no surgery and no imaging. Although I did go to the breast clinic once a year for a follow up, including a manual exam. Three pregnancies and 2 live births later (and about 4 years after first learning I was BRCA-1 positive) I was ready for the mastectomy. But I had missed my window – no longer a prophylactic procedure the mastectomy was now a needed procedure. So here we are 5 years later and my parents had to witness their other daughter celebrate Christmas bald. Fortunately my prognosis is much better than my sister’s and if everything goes according to plan I should be done with cancer on Valentine’s Day.