I’m part of a lot of BRCA communities, both online and in-person. They have been a great resource for me to research before my mastectomy and also to ask questions afterwards. One of the young women in an online BRCA group had a prophylactic mastectomy last week due to her BRCA mutation. She had her last mammogram 6 weeks ago and it came back clean. Well, she just got her pathology results back (during a preventative mastectomy they take tissue samples to make sure everything is cancer-free). Sadly, it turns out she has breast cancer. Luckily her surgeon got clean margins, so now she has to go in for a second surgery next week to remove lymph nodes and see if the cancer spread or if they caught it in time.

She has a great attitude, and is happy she had the preventative surgery when she did, because waiting even 6 months could have had a far worse outcome. She is hopeful that it hasn’t spread and she can avoid chemo. Hearing her story makes me even more thankful that science has come so far that there’s a screening for BRCA mutations and also there is an option for prophylactic mastectomies. I am also very very thankful my pathology came back clear and I chose to have the surgery at age 30, right as my breast cancer risk really started to climb.

Previvor Day

Part of HBOC week is Previvor Day, which is today! I would say happy Previvor Day – but that seems a little odd. On the one hand, being a previvor is a happy thing because it means you have a hereditary disposition to cancer but have to been affected by the disease. Although I feel so lucky that the BRCA test exists, that I found out I was BRCA2 positive in 2007, and had my prophylactic mastectomy last month – it is still really hard to take that gamble and have major surgery as a preventative measure.

I had my last expansion on Monday and it was definitely the hardest one so far. The appointment started off with me being told I was done with the expansions, but then my reconstructive surgeon noticed an indentation in the expander so she wanted to add another 100 CCs to my expanders. I really trust my surgeon and know she has amazing aesthetic results, so I decided to get the extra 100 CCs, knowing that I won’t be getting implants this large at my exchange surgery.

The good thing about the pain after my expansion is that part of it is because more sensation is returning, I’m not as numb as I was before. The bad part is that I had pretty bad back spasms the first day and my muscles are pretty sore. I know it will all be worth it in the long run and that this surgery brings my lifetime breast cancer risk from 87% down to about 1%, but it is still a difficult process at times. I start school tomorrow which I am definitely nervous about. I won’t be able to have all my comfy cushions and recliner and will have a long period of time sitting in a classroom chair. We also have a math test on the first day and it’s tough to study and retain information after Monday’s expansion. On the other hand, it’s good to get back to the swing of things. I know that starting school will make the time go by quickly between now and my final exchange surgery in December. I can’t wait for that surgery so I can have nice squishy implants instead of my turtle shell like expanders.

Being a previvor is a whole mix of emotions but I am so glad to be informed and to have taken charge of my health.