There’s not too much I’m happy about when it comes to having had a mastectomy, but after reading this article, I will say I’m really relieved that I decided to have the bilateral done, even after both my surgeon and oncologist told me that it wasn’t a mandatory decision.
The article, published in the BMJ (British Medical Journal) is based on a study conducted by a team led by Dr. David A. Cromwell of the London School of Hygiene and Tropical Medicine. They studied the records of over 55,000 women who had breast conserving surgery in England and the report found that over 11,000 (20%) of them had at least one reoperation. That’s a rate of one in five women undergoing breast conserving surgery versus a mastectomy, who required at least one second operation within 3 months.
And apparently, the rates in the US are a bit higher. A study in the Journal of the American Medical Association, of 4 large US hospitals in February of this year, reported that 23% of patients receiving breast conserving surgery in the US underwent a reoperation.
I thought I’d share the process that I went through for anyone reading, who is faced with the conundrum of whether or not to have a single vs bilateral mastectomy. It was probably the hardest decision I had to make during the entire process.
Chemo was a given for me, once I saw the results of my pathology report, and the decision there wasn’t whether or not to do it, but how aggressive to go. Once I found the right oncologist, the two of us came up with a regimen that was aggressive, but palatable for me, and I was pretty comfortable with that (as comfortable as I could be about agreeing to have 3 different toxic chemicals intravenously injected into my arm 18 times over 5 1/2 months, what a weird concept).
The option for a single vs. bilateral mastectomy was a lot harder choice for me. I got a second opinion, and asked each of my doctors, “What would you tell your own wife (or mother in the case of the young doc who wasn’t married, or yourself, in the case of my female breast surgeon) if she was in my shoes.” They all said it was a personal choice and that I’d have to ultimately weigh the positive vs. negative implications. One doctor said it to me in these terms, which helped me make the final decision:
“You need to weigh it out and decide what you can ultimately live with. If you don’t do both, will you be able to live with the worry each year when you go for a mammogram on the non operated breast? If you do elect to have a bilateral mastectomy, will the discomfort and trauma of losing both breasts be worth the peace of mind you’ll have knowing that the risk of recurrence is reduced?”
I’m a worrier. I’m also a Libra, so I constantly weigh out the pros and cons of every decision. So that resonated with me. I knew that with my Oncotype DX test score of 24% chance of a recurrence, I would begin to obsess and worry about a recurrence and from what I’ve learned it appears that the 2nd breast is one of the first places a recurrence will show up. Liver, lung, bone is not too far behind, but if I could reduce my risk of recurrence by having a bilateral vs single mastectomy, that began to guide me as I narrowed my choices over the months during which I made this decision.
And then I called my plastic surgeons office and asked what the recovery time was for reconstructing one breast, vs. two and they said that it was pretty much the same recovery time. That kind of sealed the deal for me. If I was going to be out of commission for 3 months whether I had one done or two, then why not just do both and be done with it.
By the way, both my breast surgeon and my oncologist both told me afterwards that they think I made the right choice. I’m now about a year and a half out from when I had my final reconstructive surgery and I’m pretty used to my new body. I don’t regret the decision and have to be honest and admit that my new boobs look nicer than my old ones (hard to admit, but true). I’m more proportioned, and the fact that I can wear halter tops in the summer without a bra, is pretty nice.
Again, I’m on my soapbox, but please be involved in the decisions you make when you are facing breast cancer (or any other illness). My doctors continually reinforced with me that this was my decision, but if I hadn’t asked, they would not have done a bilateral and I would probably be back into surgery again for my right breast sometime in the next few years, as the final pathology report of my mastectomy showed pre-cancerous cells in the right breast. So, ask a LOT of questions and be an active participant in the decision making process.
Claudia, I don’t know when you posted this, but I’m just seeing it now. GOod advice. I often think about you going through that decision-making process and I never wanted to tell you what to do, but I admit to being relieved when you told me what you’d decided. I was worried for you either way, but if it had been me, I’d have constantly worried about getting cancer in the other breast, I know I would have…
xoxo
Thanks, Sue.
Hi, Claudia. I went through a near meltdown trying to figure out whether to have any mastectomy at all. In the end, I opted for bilateral mastectomies, but, now, I find myself worrying about whether I have pre-empted recurrence in a breast and, instead, have accelerated recurrence in other parts of my body, where we don’t want cancer to go. Best wishes for your continued recovery.
Claudia – I went back to reread this post because my best friend of 44 years was diagnosed with breast cancer 2 weeks ago and has decided to go the bi-lateral route. Her reasoning is exactly what you have expressed here, and I will share your blog with her so she can benefit from the experiences you have so generously shared. I may be back to ask your advice from time to time and to reread everything you have published on this subject. By the way, it is her left breast, too. Regards,
Tina Gordon
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Tina – I’m so sorry your friend has to go through this, but she’s lucky to have you there to support her. I’m happy to answer any/all questions, don’t hesitate to ask. My thoughts and prayers are with your friend, give her my best. Claudia
Hi,
I have a quick question for you regarding your blog, but I couldn’t find your contact information. Do you think you could send me an email whenever you get a chance?
Thanks,
Cameron
cameronvsj(at)gmail(dot)com