Hubby has obviously been in on it since the first time the phrase “prophylactic bilateral mastectomy” came out of my mouth and wholeheartedly supports my decision to do this. Until a couple of months ago, the “circle” consisted of just the two of us. I’m still conflicted on whether this is something I’m ready to share with a wider audience, but I’m writing this blog, so here goes – widening the circle. I’ve shared my story with a few close friends and they have been extremely supportive. Getting past the initial concerns and discovering what this all means, they offer their ears, shoulders to cry on, time, opinions, and support.
The conversation with my family was hard. Mostly because I felt guilt (and still do) for adding this to their plate. My mom was diagnosed with ovarian cancer in June – same time I was going through my little “adventure.” I felt the lump the day before mom’s colonoscopy that lead to the discovery of a large tumor. My biopsies were the same day she had her initial surgery. Her diagnosis came when I was still waiting for my results. I flew to Europe to see my family in August and told my father and my sister. Dad’s reaction was much like my husband’s – terribly concerned, scared, angry that this is haunting our family. He listened to my thoughts, asked tons of questions, played devil’s advocate, but ultimately expressed his sincere and complete support of whatever decision I was going to make. My sister’s reaction was similar, but her point of view and concerns made me consider things I hadn’t thought through before. Mom still doesn’t know. She just had her sixth chemo and is recuperating before the next round of tests that will show us what is going on in there. If the tumor shrank down enough, her surgery is tentatively slotted for January. I’m holding off until we know where the chips will fall. We need her to focus on staying positive and giving this thing all she has got.
While I sometimes do have my moments of “girl, are you crazy?” or “why would you do this to a perfectly healthy body?”, I’m comfortable with the decision and ready to get this over with!
I never really worried or thought much about cancer until my sister was diagnosed with breast cancer when she was 28 (10+ years ago). She died a year later. So … annual mammograms began in my mid 20s and mid-year ultrasounds were added a few years later. The topic of a prophylactic bilateral mastectomy came up on a couple of occasions, but I didn’t think I had enough reason to seriously consider it. So far, so good.
In March 2012 an ultrasound spotted some issues. Three separate masses were present – two on the left breast, one on the right. They developed in the six months since the last mammogram. Based on quantity and consistency, the oncologist thought they were cysts. Rather than doing a biopsy to draw fluid for testing, he recommended that I first undergo an MRI screening. At this time I started doing some casual research on prophylactic bilateral mastectomies. Waiting for test results was hell, but when they eventually arrived, they were good – no cancer. Whew! High five!
Fast forward to June 2012. I felt something unusual during one of my monthly self-exams. The lump I felt was in one of the three spots where the ultrasound found issues. Another ultrasound confirmed that two of the three spots had increased in size and were now palpable. Fine-needle aspiration biopsies were done and results sent for testing. I got names of a few plastic surgeons in my area and left with a plan to start the conversations, no matter the results. The biopsy results were negative for cancer, but there were abnormal cells detected. I already knew I have “extremely” dense breast tissue/fibrocystic disease (which can make diagnosis of cancerous tumors more difficult). I was told to continue my self-exams and keep regular screening appointments as I had in the past.
January 22, 2013. Seems so far away, but I know it’ll be here before I know it. That’s the day I’m having a prophylactic bilateral mastectomy (PBM) and start the breast reconstruction process. A PBM is an elective, preventative procedure which surgically removes breast tissue (see more details under WHAT IS A PBM?). You’re doing what with WHAT? Ya, I am doing it. I have thought long and hard about what this really means. I have discussed this with family, friends, and doctors. I have done hours of research, almost ad nauseam. After considering all of the factors, the risks, the benefits, the uncertainties, the consequences, I know this is the right decision for me.