I hope for this series to be helpful to others. Some of the stuff I am encountering, though, has got to be less than common.
I mentioned last time that there is far more in the way of options than you are likely to hear about from your surgeon(s). And while you might well think a female breast surgeon is the best choice, there is at least one possible downside. You may have very different values. I have, for example, come to think that the cosmetic aspects of her breasts are an extremely big deal to my surgeon. I value non-intrusive surgery much more than she does (duh!).
So one problematic situation I am in is that I have two really world class surgeons – one the breast surgeon (BS) and the other the plastic surgeon (PS) who think I’m making a huge cosmetic mistake in insisting on a lumpectomy over a mastectomy (plus reconstruction), AND for them, a huge cosmetic mistake is a huge mistake. Everyone is clear that the medical benefits are too close to choose between them.
I’ve spoken to another doctor, totally separate from this, and he’s said there’s all this stress on cosmetics because they just haven’t had the time to explain why it is really medically important. But they’ve had plenty of time to tell me and I am pretty sure that with the whole crew cosmetics is a very big deal. They record the amount of time we discuss things as I think we’re at about 3 hours now.
It may be that they would benefit in some way I can’t see yet, but it may also be the culture. According to Wiki, for comparable cancers, the percentage of mastectomies over lumpectomies is 76% in Eastern Europe, 54% in the US, 42-44% in No. and So. Europe and 36% in New Zealand and Australia. (I’m relying on memory so I might be a point or two off.)
Further, to say that I have had to go to some effort to get the surgery I want is an understatement, if one counts enduring highly stressful situations as work. When I had my consultations with the PS, he simply went beserk. It really was awful. My spouse compared him to a famously nasty academic. I’ve seen people turned red and say angry things when I’ve said “I understand that that is your position, but I disagree for the following reasons.” But this quickly became uncivil, and I couldn’t even finish a sentence before he rushed in to say it was a stupid question or to jeer at me.
So I am putting in a lot of effort to do avoid a highly invasive surgery, and I may well fail. The surgeon needs to get “clean margins,” which is a cm at least of tissue without any malignancy; if she can’t, it is bad news for the breast. But I think putting in the huge effort will make me feel better if I do fail. And I’m wondering about whether this sense is fairly idiosyncratic or whether it might even be a general human psychological characteristic. That is, other things being equal, would putting in a lot of effort even though you eventually fail make the failure easier to endure?
Suppose there’s a job possibility or a grant available and you put in a great deal of effort to get it. Will the effort make you feel better about not getting the job or not getting the grant? Or perhaps the actual effort has secondary effects that make it worth it? Or is it that some of us don’t want to be the sort of people who approach important things carelessly? And why?
The second question is about the stigma of not being a good patient. Are there things, such as people’s efforts to help you, that really you cannot complain about without a big social cost? I was brought up short by someone’s saying to me last night, “Remember these people are all trying to help you.”
At the risk of showing myself to be very ungrateful, I will mention the the physician’s assistant, who stood between me and the BS. She is a very sweet and nice young woman who obviously takes it as her mission to explain why the BS is right. She’s also the first line of defense, so she’s supposed to answer one’s questions. One day I said that I wanted to find out the grade of my cancer. Grade is important in finding out how aggressive it is. She looked at the chart, saw it wasn’t there and appears to have inferred that the pathology people couldn’t determine it. So she explained to me that they couldn’t grade the cancer since there weren’t enought cells to test.
Even I could see that couldn’t be right. And in fact the initial grading showed up in the system a few days later.
And then there was the psych consult, which I should have refused. Having happily, but with faulty statistics, explained which behavior of mine caused the cancer, the social worker decided to show me how to change my behavior. We started with a big circle to cover all aknowledge. I knew this was not going to go well, but to my credit, I think, I remained very polite though it all. The kind of cancer I have is very rare and no one knows what causes it, btw.
My hair guy would disagree that they are all trying to help me. He thinks they are part of a conspiracy to make money. He holds that cancer is a fungus and is best treated with baking soda. And there are people on cancer discussion boards who say they believe this theory. And that’s how they will act. This is American, after all, when people apparently learn so little in school that they actually believe a lot of stuff that seems really clearly loony.