The rest of the BRCA risk reduction story

Once I had finished the oophorectomy, the BPM loomed ahead. Bilateral prophylactic or preventative mastectomy meant removal of both breasts before cancer was identified. I only had 36 days between the 2 surgeries. BPM is such a hard thing to consider. Definitely disfiguring. Extreme. More drastic than the treatment of most breast cancers. Unfortunately, BRCA breast cancer is not like most breast cancers. It tends to recur if mastectomy is not done. No one could assure me that surveillance could promise catching the cancer early enough to be curable.

Both my Gyn and Family Medicine doc said that the oophorectomy was needed, but that I did not have to have BPM. I suspected that they did not want me to get stuck on whether to have the mastectomies and put off the ooph in the process. The appointment with the genetics counselor had confirmed that my risk of getting breast cancer was very high, and that tamoxifen would reduce my risk by only 1/3 as many BRCA1 cancers are estrogen negative. To gain the full 50% reduction of risk for breast cancer by having an oophorectomy, I would have needed to have the ooph at 35. Unfortunately, I was blissfully ignorant at that time. The GC mentioned some modest benefit from dietary and supplement measures I could take. Then she seemed very relieved to hear that I was planning on BPM.

I played with the statistics. 87% risk x 80% long term survival still came out to 17% chance of being dead, and possibly in my 50s.

I felt that there were many things that made this choice easier for me. Mom did so well after her BPM for lobular carcinoma in situ in 1988. I knew how devastating cancer could be after watching and unrelated uncle die of colon cancer, seeing patients struggle with it, and watching my housemate’s mother fight so hard against metastatic kidney cancer. A patient’s CT scan is indelibly etched in my brain. I saw her 2 days before my test results came back. At 52, she had mastectomy with saline implant on one side, mastectomy with external prosthesis on the other and lung mets, all on the same film.

I wanted my BPM as soon as I could arrange it.

The next step was to decide on reconstruction or not. I explored the FORCE site and took note of the posts about each type of reconstruction. I was very pleasantly surprised at the post op photos on FORCE and elsewhere. I was also pleasantly surprised to see a photo of a topless Dutch woman, swimming on the beach, surrounded by her children with a big smile on her face. The scars were evident, but not bad at all. I participated in a spirited thread about “no recon” options, including discussions of whether it is possible to have a cosmetically appealing surgery, like some male to female transsexuals receive.

Reconstruction seemed like a long process whichever type was chosen. I was very aware of my aunt’s complications after her TRAM procedure. I never did consider traveling for a “One Step” procedure.

I felt that “no recon” fit with my personality and my body image. When younger, I was thin, fit, and small chested. I still tend to think of myself that way, although the body got away from me long ago. I tended to begrudge the D’s that went up and down first with every fluctuation in my weight. I dress androgynously, and usually in men’s clothes, which often don’t fit well or require a larger size because of my large chest. (and wide hips) I thought that reconstruction would result in longer rehab time and more restrictions, as well as a higher risk of complications. In my profession, as a physiatrist, I had seen some serious disabilities result from surgical complications. I wanted to avoid that at all costs.

The morning of the surgery, I felt calm, and was pleased that the anesthesiologist honored my request for no versed. I had been in la-la land for about 5 hours after my previous surgery and did not like that feeling. My friend and my parents were in the waiting room with me. It was nice for me, to be awake in the OR until they gave me the general anesthetic. I awoke in the recovery room, clear, but in pain, and very relieved to be done. I was a bit dismayed by the pink flowered binder around my chest, but took it in stride. The pink binder was a good source of comic relief during the next few weeks. It also made car rides much more manageable. The pain meds were delivered quickly and worked well. I had a long ride to the overnight stay area, and was glad to be awake to reassure my parents that I was fine.

There was a brief struggle with balancing the pain and nausea during my night in the hospital. I was so glad to be in the hospital overnight. The ride home was uneventful. It was very nice to have my parents stay the first few days. It was also nice to feel comfortable managing for myself. I was able to take care of the drains myself and get a quick meal or snack. I slept a lot, and vegged out. I gladly included my mom and my housemate in my photo project to document my look over the first few weeks after surgery. I was very pleased with how well the muscle shirts worked for drain holders. My appearance at the local Relay for Life event 4 days after my surgery was ceremonial only, but there is a photo. My Great Goose photo earned some money for the event.

The next few weeks revolved around pain meds, meals, rest and computer time. My family doctor helped me get a pain regimen that worked. It included Vicodin during the day and MS Contin at night, and low dose lyrica for the nerve pain. I posted on FORCE a lot. At 3 weeks after surgery, I went back to the breast surgeon. She deemed my drain output too large to pull the drains and chided me for typing too much.

One week later, I had my local surgeon pull the second drain, after the Family Medicine physician helped with the first. We decided that we would watch any fluid that remained and take action if needed. I returned to work 4 weeks after surgery. My heart was not really in it. I was thrilled to see that my patients were so supportive and welcoming.

Gradually, I resumed my usual activities, including golf, kayaking, biking, and a little yard work. The pain and ropelike sensation around my chest gradually resolved. The scars have evolved over time. It took about 8 weeks for the fluid to resolve. I had small scares with a stitch granuloma and a case of cellulitis without pain, fever or illness. Those resolved with oral antibiotics.

Now, at 6 months out, the scars are still red and obvious. The chest muscles only occasionally get tight, and there are intermittent weird sensations as the numbness slowly resolves. I am back to full activity, and more engaged at work. I still rely on the FORCE message board and chatroom as a part of my coping process. I was thrilled to be able to meet men and women from the Boston group this weekend. Strangers don’t seem to notice that I don’t have breasts and a few of the FORCE women asked which kind of reconstruction I had.

I am very proud of myself for being able to take action so quickly. I was thrilled last week to be able to respond to a coworker’s question that I had decreased my breast cancer risk from 87% to 2%. I am still not sure what the future will look like, but am happy to be planning instead of worrying.