Why I chose Bilateral Mastectomy
This is a post that I’ve been trying to formulate for months now and I will try hard to make it coherent. It’s so difficult because answering this question means facing the fears that came along with making a decision on the course of treatment for my breast cancer. Jeffrey and I (and sometimes just I) had a month or so of daily doctor appointments. We got second and third opinions. I had biopsies and ultrasounds and MRIs. I got second opinions on my pathology and the second opinions went back and forth with the first opinions until they could come to an agreement. In the end I was faced with deciding between this shitty choice or that shitty choice. Which do you choose? I could choose between a bilateral mastectomy or a second lumpectomy combined with 6 weeks of radiation and tamoxifen for 5 years. The docs asked me what I wanted to do. My answer was neither. I don’t want to choose either of those options. Cancer wasn’t fun anymore and I wanted to go back.
When I first got the diagnosis of breast cancer I was sure we could just do a lumpectomy and radiation. Easy surgery and just daily visits to the hospital for radiation and I would get to keep my breasts at least for now. I did have a feeling that I would lose my breasts at some point if something else showed up but I figured I had enough to deal with and I should just take the “easy” option for now and deal with it later. But things got complicated when the plastic surgeon told us that radiation would make reconstruction significantly difficult. It permanently damages your skin especially mine since I have fair skin. There are also significant medical risks associated with radiation therapy. It can affect your heart and lungs and even increase risk of other cancers. I was also told that I’d need to take tamoxifen. This drug blocks hormones and essentially puts you into menopause. That’s not exactly an attractive thought but the most worrisome is the increased risk of uterine cancer. My mother’s cancer was identified as ovarian and uterine cancer but really it was too advanced to find an exact point of origin. I asked the oncologist about that uterine cancer risk since my mother had it and he said that it isn’t a concern for premenopausal women because they continue to have their periods. Really? Cause didn’t you just say that it will put me into menopause? It wasn’t very comforting to me.
As far as the medical establishment is concerned my cancer is not related to my mother’s cancer because there is no clear evidence of a connection genetically. I did not test positive to the one genetic link between ovarian and breast cancer but the doctors say there will likely be more genes isolated in the future that are associated with breast cancer. In my mind the cancers are connected. I was 31 at diagnosis with no other risk factors aside from a mother with cancer. These two cancers will always be linked in my mind. My cancer was growing and undetected even as I was sitting with my mom at her first chemo and spoon feeding her ice chips at the end. So, when the radiation oncologist at one of our appointments was reminding me that my cancer was really no big deal and was putting more effort into discussing 1980’s BMX bicycles and races with my husband I was shrinking into my loneliness and fear. Of course, I know that my cancer was not the same as my mother’s. I KNOW what metastatic cancer looks like. But that doesn’t make our decisions any easier. In fact, I think it made it harder. The oncologist urged me to think rationally and logically and pointed out that my thinking pattern was being affected by my mother’s death. Yes, it was. My thinking was also affected by the fact that I was diagnosed at 31. Statistics are meaningless when it is you that falls into a miniscule percentage point. A 8% chance of reoccurrence is seemingly small until you remember that there was only a .2% chance of getting cancer in the first place. The statistics they use are for all women with breast cancer. Not just the set under 40. What are the statistics for reoccurrence of DCIS treated with lumpectomy, radiation and tomoxifen in women under 40?
After the first biopsy and first pathology report my original diagnosis was Invasive Ductal Carcinoma with an estimated size between 2-4 cm. That would put me at stage II. When I thought about that stage II number I was really scared. Not just very annoyed and confused at the inconvenience and unfairness of cancer but I was scared that the cancer would kill me. I was told by the doc that it would kill me if I didn’t treat it and that I would have been dead before my first scheduled mammogram (at age 40) had I not detected it by palpation. I talked myself into a bilateral mastectomy because it would be the safest option. I wanted to do everything that I could to eliminate risk. I had a hard time letting that go even when my diagnosis was downgraded to DCIS. At that point I had already been through so many doctor appointments and ultrasounds and biopsies and a surgery that I knew that I would not be comfortable with the checks every 3 months to check for reoccurance or spread. I would need to have mammograms (which did not detect my cancer anyway) and MRIs to check status. With a breast cancer history I knew that every little cyst and abnormality would have to be biopsied and that would lead into more stressful waiting periods not to mention sore and bruised breasts. I didn’t think I could handle it. I think I knew in my heart what I would decide but I wanted to be sure to consider all the options. I went back to the source of knowledge that I trusted the most… Dr. Lilly.
Dr. Lilly invited us back to review results from our group appointment with oncologists and pathologists and another breast surgeon. I’m glad that we went for those other opinions because I know that I looked at all options before making a decision. Dr. Lilly tends towards bilateral mastectomy for younger women. He says that he has some young women who do not want it and he respects that but he feels nervous every time they come back for a follow-up appointment. He’s been doing this for a long time and he’s seen too many reoccurrences. He wanted me to consider the long term outcome and not think for just right now. He asked me what my fears were. I told him that I was afraid of the pain and recovery period of a mastectomy and afraid of reoccurance from a lumpectomy as well as the unknowns from the radiation and tamoxifen. I asked him outright if a bilateral mastectomy was overkill for my diagnosis. He said “no, it’s not”. I knew right then that that’s what we would do. We signed up for a bilateral mastectomy to be coordinated with the plastic surgeon for immediate placement of tissue expanders for reconstruction.
In spite of the pain and discomfort and sleepless nights over the last few months I do not regret my decision.