This week was the first week since this whole thing began that I haven't had any doctor's appointments, tests or treatments. Luckily the weather cooperated and brought with it some beautiful spring temperatures!
However, I did end up seeing a couple of my doctors anyway, as Dr. Rosenbaum Smith (my breast surgeon), Dr. Samson (my plastic surgeon), and Karen Ott (the genetic counselor that I saw) all spoke on a panel discussion that I attended this week, along with two breast cancer survivors.
The topic focused on assessing women's (and men's for that matter) risk of getting breast cancer, not only for those who do not have a history of the disease, but also for breast cancer survivors assessing their risk of a recurrance.
Granted much of the information discussed, especially as it relates to genetic testing, was stuff I already knew. But the panel discussion did give me a lot to think about as I ponder the single vs. double mastectomy decision.
In fact, the very first topic raised at the panel discussion was about a recent article that appeared on NYTimes.com about this very subject. You can check it out here. Dr. Rosenbaum Smith said that she thought it was a pretty good article.
One of the key things I learned from the panel discussion and this article is that removing a healthy breast after a cancer diagnosis does not really have an impact on survival. Since I now have a history of breast cancer, I will be closely watched and tested every year. Therefore, presumably, any cancer that develops in my left breast would likely be caught very early and treated before it has a chance to spread and become life-threatening.
Also, any future cancer in my left breast would almost certainly be unrelated to the cancer in my right, as it's very rare for cancer to spread from one breast to the other. In fact, I should really be more concerned about the cancer that I do have spreading than I should be about a second cancer developing in my left breast.
My chances of getting a second breast cancer are slightly higher since I have a history of the disease, but are not as high as it would be if I had tested positive for the mutated BRCA1 or BRCA2 genes. The risk for developing a second cancer is about 40-60% for gene-positive survivors, and Dr. Rosenbaum Smith said she thought the risk for gene-negative survivors (like me) was about 20%.
In addition, removing the healthy breast does not 100% guarantee that breast cancer won't develop, although it does reduce the risk to about 1-3%.
So, if a double mastectomy does not impact survival rates, why do people do it? Here are some of the reasons:
Peace of Mind - Some women say they don't want to "live in fear" of getting a second breast cancer diagnosis for the rest of their lives. They want to avoid the anxiety that comes with their yearly mammogram and waiting for the results.
My Take: Personally, this is not a strong enough reason for me, as I don't think that I am the kind of person that will live in fear - either of developing a second cancer or of my current cancer reappearing. I do not believe in worrying about things that I can't control because I just don't see the point. So, I tend to assume everything is going to be OK, until it's not. And when it's not, then I deal with it. This attitude has served me well, as when bad things happen (like when I was diagnosed in January) I have never once looked back and said "gee, I really wish I had worried about this before it happened." So, I anticipate that when this is over, I will just continue with my life, being diligent about my yearly tests, but always assuming they are going to turn out OK. And if they don't, I'll deal with it then.
Avoiding Future Breast Cancer Treatment: Having gone through treatment once, some women want to avoid ever having to go through it again. One woman on the panel - who did have a presumably healthy breast removed after a cancer diagnosis in the other breast - said that she did not want her life "defined" by breast cancer. She wanted to move on and put the experience behind her, and remove (or greatly reduce) her chances of having to go through it again. (And she turned out to have made the right decision because tissue from her "healthy" breast that was examined after removal found DCIS - that's stage 0 cancer - throughout. Mammograms don't always pick up everything, unfortunately.) Of course, as I said, presumably any second cancer would be caught early and therefore it's less likely that extensive treatment like chemo would be needed, but not impossible.
My Take: This makes a little more sense to me. I can totally understand not wanting to have to go through treatment again. But is it enough to have my entire breast removed? I'm not sure yet.
Aesthetics: Some women worry about how one natural breast and one "fake" breast are going to look, and so they choose a double mastectomy to ensure their boobs look "even." Dr. Samson said that walking down the street no one will be able to tell that one of my breasts is fake. But, of course under my clothes there will be some differences. In addition, some women see this as an opportunity to "go bigger" (or smaller, but much more often bigger).
My Take: This I understand too, but again, I'm not sure I feel strongly enough about it to be a deciding factor. I've never had a great desire to change my size, and so even if do decide to have a double mastectomy, I'll probably end up with something pretty close to what I've got.
Some women feel strongly AGAINST getting removing a healthy breast after a cancer diagnosis, for the following reasons:
Avoiding Unnecessary Surgery: Why fix what isn't broken?
My Take: Yep, I get this. But, having a single vs. double mastectomy does not make the surgery that much more risky or invasive really. I believe the recovery times are the same. It's not as much of a difference as, say, implant surgery and the TRAM flap surgery.
Missing Their Boobs: Some women strongly identify their breasts with their femininity. The idea of losing one breast is traumatic enough that they choose to hold on to the other one as long as they can.
My Take: Me? Not so much. Quite frankly I never really thought all that much about my breasts before I got cancer, so they really don't symbolize anything in my mind or define me in any way. I could see this being an issue if this were years ago and reconstruction was not a viable option, but as long as I have something there, real or fake doesn't really matter all that much to me.
Losing Sensation: Some survivors worry about the possibility of the living the rest of their lives with no sensation in their breasts.
My Take: I get this too. It is true that having a mastectomy means that I will lose feeling in that area. But Dr. Samson said that after about a year, most women start to regain at least some feeling.
The reason I'm struggling with this decision so much is because, as you can see, I don't really feel that strongly about any of the reasons that pull most women in one direction or the other. The TRAM flap vs. implant decision was pretty easy in comparison. I really don't want that giant abdominal scar, and that pretty much made my decision for me. But there is no "giant abdominal scar" factor for me in this decision, so I'm left flip-flopping. Today I'm feeling single is the way to go, but ask me tomorrow and I'll probably say double.
I have a bit of time to make this decision - I don't need to decide until my surgery needs to be scheduled, and that depends on how many chemo sessions I will need.
I spoke to Dr. Rosenbaum Smith after the panel and said that it was funny that this was the topic of the discussion because it's something I wanted to talk to her about. I asked if I should make an appointment so we could discuss my situation, but she said it's really my decision. She said I need to sit down and be really honest with myself about which is the best option for me. She's had patients choose each option and be very happy with the results. Because it's not a medical decision (like how I medically need the right breast removed no matter what), she can't really steer me in one direction or another - it's something I have to decide for myself.
So, I have a lot to think about and some decisions to make!