My first "every three months"

Can you believe it has already been three months since I finished treating my malignant little foe? Yesterday Michael and I met with Dr. Skinner for the first of my "close surveillance"check-ups. I hadn't seen her since I went to Boston and met with the good folks at Dana Farber, so we were eager to hear Dr. Skinner's take on all that. It felt a little strange going back to something I had so happily placed on the back burner.

First, she asked what had happened in Boston, so we told her. I'm not sure why this was to my surprise, but she agreed! Well, not exactly - DF was saying I should have a mastectomy as soon as possible. Dr. Skinner said that was the best medical option, but this wasn't strictly a medical decision. Here's how she explained things:

The chance of my DCIS returning is not very high. They'll follow me because they're supposed to, but she's not worried. In response to my saying a bilateral mastectomy feels drastic, she said, "It would be for DCIS. But it's not for your DCIS. We know that for patients who receive mantel radiation (down the center of the chest), the risk over 30 years of getting breast cancer is about 40%. What your DCIS has done is show us that you are more likely in that 40% who develop breast cancer, and so you could very well do that again. So the original cancer (that particular DCIS) probably won't come back, but your risk for developing another primary cancer in a different area of the breast is still just as high. You are a very high risk person." 

(Oh, we also learned an important distinction. I've been calling this a secondary cancer. It's not. A secondary cancer is the same cancer that appears in a second area. This is a second primary malignancy - not related to Hodgkin's at all except that the treatment for Hodgkin's likely contributed to its development.)

So, as Dr. Skinner also told us at our last appointment with her, ultimately a bilateral mastectomy is the best option for me. She said strictly medically speaking, doing that as soon as possible is the best. But this is not strictly a medical decision. "Only you can decide when the best time is." She also made very clear that my chance of dying from some second (third) primary cancer developing in my breast is quite small, less than 1%, because I am under high surveillance and anything that appears will be caught very early. We also learned that mammograms become possible again after the first trimester of a pregnancy, which makes me feel a little better. 

I should also add that the data we're going on is based on people who are currently in their 60s, meaning they were treated for Hodgkin's or whatever required radiation as much as 40 years ago. Treatment was obviously different then - Hodgkin's used to be treated exclusively with radiation. The purpose of my fairly new (at the time) treatment, however, was to reduce these risks. Data doesn't exist on follow up for that, simply because it is too new. Darn that! But, that said, I did still develop breast cancer already, so I am still in whatever the percentage is of women who develop breast cancer after mantel radiation such as I had, whether it's 10% or 50%.

We also talked a little bit about reconstruction options, but she did suggest we talk to a plastic surgeon for more details. Probably what they would do is take a tissue flap from my back and swing it around to the front. That flap would cover some sort of implant (because I don't have enough extra in my physique to fill two whole boobs - she said either implants, or I start working on filling out my physique now!). Implants alone are not so good for radiated breasts, but covered with an organic flap it would be much better. Recovery for all that, she would say 12 weeks. Although, she added, with my work I could maybe return sooner at least to the office work side of my job. 

So, it's decision time again. I could decide not to do it at all. The chances that I won't develop breast cancer again are still probably greater than the chances that I will, but it's not the 80% in which I was previously relishing. So, I guess I'll do it. But when? Right now? No. Right after we get married, so that a) I can be on Michael's insurance (which is better than mine), b) he will be able to take significant family leave time and take care of me while I'm fairly helpless? Maybe. After we have a couple kids? That sounds better because then I probably could breast feed, and, vainly speaking, so I could enjoy a few more years of a whole young woman's body. On the other hand, that means I have several more years of high risk life (probably at least 4 or 5), and I would have a couple little ones running around while I have a major surgery. Not ideal. What is most important? What is smartest? How on earth do I weigh the goals of having children and living a securely healthy life? That's assuming the surgery goes well - there are scary things about a major surgery, too! 

Did I mention I hate making decisions?

I will say, however, that I feel much more at peace about this now than I did two or three months ago. I'd still rather I didn't have to do it, of course, and I would not at all say I want to. (I talked to one woman who said she felt joyful on the morning of her double mastectomy! I'm not there. But then, she had three children already.) But I am not as viscerally averse to it as I have felt before. Michael continues to be 100% supportive of whatever I decide, and will do what he needs to do to support me physically when the time comes. The rest of my family, too, is just full of love and support for me in whatever decision I finally make. I have much to be grateful for.