Decisions

There's a saying about New York that applies to the breast-cancer community too: There are 8 million stories in the naked city.

Every woman with breast cancer has a specific set of factors she must consider in making decisions about her treatment. For some women, the choice is clear. For others, the decision-making process is the most stressful part of the breast-cancer experience.

My decision to undergo a bilateral mastectomy after having a lumpectomy and re-excision on my right breast was based on a unique set of circumstances: There was disagreement between my first- and second-opinion doctors about whether the margins around the re-excision were clear. My tumor was an unusually aggressive kind of lobular cancer, and women with lobular cancer are somewhat more likely to get a tumor in the other breast. My tumor hadn't shown up on the mammogram I'd had a couple of months before I was suddenly able to see and feel it, so I was concerned that a new tumor wouldn't be found by mammography either. Both breasts were dense and had areas of micro-calcifications—risk factors for breast cancer—so I was going to require frequent monitoring of various kinds.

All those concerns, plus the fact that I'm a worrier by nature, led me to choose the most aggressive surgery.

I actually didn't have much trouble deciding to have both breasts removed. But a friend suggested that I make a list of pros and cons so that if I ever felt regrets, I could look at the list and remember why I chose that course. I haven't felt regrets, as it turns out, but making the list was reassuring because I realized how certain I was about my decision.

Another woman in my situation might make a completely different decision. She might choose to keep one or both breasts. And I can understand that. After all, even my well-trained, experienced and talented doctors disagreed in their advice. But I feel confident that my decision was right for me.

For me this was not a difficult decision. When I learned that there was no survival benefit for mastectomy in my case, I decided to keep my breast and have radiation therapy. The prospects of a smaller surgical procedure as well as my appearance and sensation all seemed positive.

However, if I had carried the BRCA gene or if any other medical situation had made mastectomy an appropriate choice, I would not have hesitated to choose it.

In my perfect world scenario, no woman who is newly diagnosed should be making her health care decisions without backup. Backup may be a friend, a family member, a nurse advocate, a social worker, etc. With that in mind, here are a few suggestions:
1. If nothing else, make sure that you have someone with you at critical doctors' appointments. This person should be able to ask questions, take notes, etc. Ideally, they'll be someone who is good at explaining things, so that if you have questions later, you can check in with them.
2. In addition to having a back-up person, consider using some technology. Take a digital recorder, or use the recording tool on your cell phone.
3. Set aside some time to process your emotional reactions. If you need an evening (or several), to cry, to say that it's not fair, to freak out, please give yourself that time.
4. Use resources to generate questions if you're feeling overwhelmed. Sites like this one can be a great place to get some direction on the things you may need to ask. The social worker or nurse advocate at your cancer facility should also be able to help with that.
5. This may make me sound like a broken record, but I also think it can be valuable to get additional support, particularly during the most intense period of decision-making.
I know that this is a huge topic, so I'd welcome any follow-up questions.