I am a regular blogger here, but I want to make these posts be about having breast cancer, and not about me, and I don’t know how to describe what I am learning except in terms of my experience. So I’m hoping I’ll drop out if you don’t know who I am.
I am learning a lot, some of which may sometime be of use to readers here. If you’ve gone through having breast cancer treated, you may have a different take. You may also think I am wrong about something. Believe me, I welcome disagreement as long as our “be nice” rule is followed. Though I want the post or posts to be about what I’ve learned, in fact what I am learning may apply just to me or to people like me.
One thing I know, for example, is that my attitude would be entirely different if I still had young children. Another is that my attitude to some issues might be very different if I were looking for a serious male partner. As things are, cosmetic issues are low on my priorities and quality of life issues are very high. I’d be more willing to risk bad side effects if there were young children to see to; I’d take my surgeons first advice if I were looking for a partner, for example.
So let me mention a few preliminaries. One is that the news one has cancer can suddenly put one’s life in a perspective you haven’t been able to imagine. I had often wished I could follow the advice of imagining what it would be like to know you had only a short time to live. I just couldn’t really make it real. But the delay between the news you have breast cancer and the news about how far it has spread was much more than enough: within about 8 hours I had done a first assessment. Here is what is most important to me that has been done and the repairs to relationships that have been made, here is what needs to be done, here is what I may have to give up thinking I can ever do.
The cancer I have looks to be early, but it is multifocal, which means there are two or more locations for it. Though there is just a tiny bit of invasion so far, it is an invasive type. The big question for me was whether I should have a lumpectomy or a mastectomy. The first surgeon I saw didn’t know about the second tumor; I went for a second opinion to an altogether much higher grade cancer center, something with pluses and minuses. The second surgeon was clear: it should be a mastectomy. In fact, by this time I had had a lot of appointments, and had realized that my blood pressure could go very high – with 180 as the top figure – when things turned to questions about how much longer I had to live, whether I could lose the use of my arm, etc. So I took a reasonable dose of xanax, which may be why I didn’t quite register the problem in her reasoning: Since the cancer has two locations, a lumpectomy would not give a good cosmetic result, so I should have a mastectomy. Plus she is well known as a world class surgeon and I was still totally stunned by what was happening.
So when I went to revisit the decision on the web, I found out that countries vary for comparable cases on whether one has a mastectomy or a lumpectomy. The rate for a mastectomy in eastern Europe is the highest, if I remember correctly, and that in NZ and Australia the lowest. The US is a bit high, I think. And there is some concern that there is a kind of national consensus that takes place among surgeons.
One thought that occurred to me was that no one says “the operation is going to leave your leg looking cosmetically undesirable, so we should just cut the whole thing off”. So what’s the difference between a leg and a breast? Function, one might say. However, besides the obvious breast feeding, there are certainly things with function that can get damaged or taken out with a mastectomy. So in fact one begins to think that the cosmetic result is actually very, very important for some of the surgeons planning to do the surgery. And indeed my surgeon was really extremely surprised that I might not care that much about the cosmetic results. She suggested a psychiatrist, in the nicest way possible. And to be perfectly fair, I may have said I’d rather be dead than have a mastectomy, or something equally alarming. I have little enough experience of doctors doing what I want, and I have the uncomfortable feeling that I have learned that having a little outburst can change the odds.
I have discussed the situation with women who didn’t realize they could push for a lumpectomy and others who did realize but let themselves be talked into a mastectomy. They were not best pleased. I also know of younger women who have had preventative mastectomies and are really happy with the results. If I were 30 and my concerns had to do with living for children and cosmetic results, I might well be too. Basically, you are going to be a C or more, however uneasy I as a feminist feel about seeing that as an improvement. In fact, let me close with a video that really does affirm that a double mastectomy need not at all be the end. It does, however, require courage.
The women in the above video made one a year after her diagnosis, and you might want to see it too:
There are alternatives to the reconstruction route she took. You can have skin taken from your back or your abdomen to create breasts. In the latter case, you will also get an improved abdomen, I note crossly that they always say.
So the lesson for this post is that there may be more options available, and more factors to consider, than you’ll find out from your surgeon. Next time I’ll mention one of the downsides of a very big center full of hyper-specialists. A hint: you know how students can get you worried when you hear one explain to another what you said? Well, at a big center in between you and the surgeon may be a student! O no! I think they’ve decided to cut the student out in communication with me. We were probably both very traumatized.
And of course at some point there are the lymph nodes, on which I’ve ended up taking a very firm stand.