Another someone told me to write a book today. Apparently my descriptions of this cancer/surgery/chemo/whatever is yet to come are quite apt. Apparently I am able to define how I feel and convey it in a readable way. Really, I have a hard time imagining that what I am going through is all that difficult. Certainly, I would have rather taken a family holiday this summer rather than ingesting poison, and certainly I would prefer to have my actual brain rather than this chemo-addled one.
All the same, I find I do have a few things to say.
Being a scientist, I was not content with having a physician recommend anything to me in the big fight against cancer. Physicians are smart enough and all, in their way I suppose, but they tend to be very black and white in their recommendations. I don't think they have much choice, but here's a for instance....
When I was given my cancer diagnosis, it was from the surgeon who'd be removing the cancer, not from an oncologist. I would really have preferred to get my information from an oncologist, but the size of the tumor (small) meant that the first thing that would happen is surgery, so to the surgeon I went. She was a lovely woman, and she told me about the tumor and about the statistics of recurrence if I chose a lumpectomy/radiation versus a mastectomy. In fact, the stats say that the recurrence rate is 10% in both cases. Pretty low. Lumpectomy without radiation is higher, at 30%. Not a good choice. A small tumor is less than 2cm, which mine was, so the surgeon was leaning to the lumpectomy option.
Me, I didn't think I'd have an option, firstly. Secondly, it did not make sense to me to make a decision about surgery without knowing more about the cancer itself. How do I know whether it had spread, or whether it was likely to? How did I know that it wasn't a lot bigger or more diffuse than the surgeon thought? At this point, I didn't know anything about breast cancer (other than the obvious: cancer, in the breast)so how could I make a rational decision about what kind of surgery to do?
This was on May 29, with surgery scheduled for June 11. I told her not to change the surgery date, and that I'd have to get back to her. I came home, I looked up invasive lobular carcinoma, and I emailed a bunch of people, family, friends, colleagues (out of province types, those who weren't likely to blab to anyone at work) and found out as much as I could. The breast cancer research people were of course my best resources, the brother of BF1's husband, the most useless (he's a surgeon). The opinions were divided right down the line: those who had not been witness to cancer, who didn't work in the medical field (with the exception of BF1's brother-in-law) or who were concerned with appearance: lumpectomy. Within that group there were other consultations with people who'd chosen the lumpectomy option, and who were satisfied with that choice. The other half? "Cut the traitor off!!" They were hell-bent for the mastectomy, do not pass go, do not collect $200.
And me? I had to listen to reason. Reason says that invasive lobular carcinoma is made up of cells that tend to striate, or that don't tend to stick together in a well-formed clump; they tend to migrate. Thank-you, but small tumor? I don't care, it's all got to go. And it was the scariest decision I've ever made in my life, to option for amputation. Option for mutilation. Option for get rid of all the cancer.
Invasive ductal carcinoma is much more common (occurrence about 85% of the time) and the cells do have the protein that helps them stick together. (can't remember name of said protein, sorry.) I don't have that. My surgeon was surprised that I would choose the more radical option, but for me it was the best choice, the one that gave me most peace of mind. The one that might avoid sweeping radiation, another thing I wasn't keen on, seeing as I've spent most of my scientific life trying to avoid radiation exposure. Just didn't make sense to voluntarily expose myself to that.
Not that I've avoided radiation, but that's another part of this saga.
So my moral here is trust your doctor, but do your homework. Get opinions. Find out as much as you can. I am privileged in that I have lots of academic resources at my fingertips, people as well as literature. I can find out almost anything I want to know, but so many people don't have the resources I have. Make the doctors explain everything to you, more than once. Get an appointment with your GP and have them go over all of this with you. Talk to people, look at websites. I know that the first instinct is to want to hide and deny that any of this is happening, but you need to be part of the decision-making process. You can be a malleable ragdoll later, but not when you first hear about the cancer. Take a stand. Be afraid, but take a stand anyway.
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2 comments:
As a practicing radiologist who has talked with many women with your choices and guided my mother's choice -guided her to appropriate people to talk with not make her decision- I think you made an informed appropriate decision. As in so many aspects of medicine there are many gray areas where there is no clear cut choice.
My advice to women I have diagnosed with breast CA is to talk with her surgeon, a medical and a radiation oncologist and then with her primary care physician. She can then make a truly informed decision.
Good luck.
I agree, but sometimes it is hard to get all of those doctors together before surgery happens. I could have put the surgery off, but that didn't make sense to me either.
I think that one of the biggest problems is that when we are given a cancer diagnosis the first thing we want to do is hide, or let someone else make a decision for us. I certainly wanted that, I really wanted to be told what to do. It would have been so much easier than what I did. And this, even though I am not a wimp in any way, but I so wanted to be led around, to not make any decisions. I had enough to deal with, without decisions thrown into the mix.
At the same time, I wanted very much not to be told what to do. Catch-22.
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