When I was arguing that I’d prefer a lumpectomy over radiation, the breast surgeon and the plastic surgeon both took radiation as the big down side to a lumpectomy. With a mastectomy I wouldn’t need radiation, though women with more advanced cancer often do. I remember after the surgery I told the surgeon I was happy with the results. “Well,” she said, “we’ll see what you say after radiation.” O thanks.
I had the accelerated Canadian protocol, as it is called in the States, but still it was 5 days a week for 4 weeks. Sometimes there were long waits since the machines were down; it usually took minimally 2 hours, including driving back and forth, waiting for the car, etc. Patients getting radiation were given free valet parking!
Those waiting for treatment sit in a small area. Everyone brought in some snacks for their last day, and we’d sit and tell our stories and sometimes munch. Many women had also had chemo and had lost their hair. There were very amazing women. Women with very little hair can look like medieval saints.
The first picture has me in the kit we tended to wear to the radiation machine. You won’t be able to miss the machine. That big thing moves up and over one; for most of my treatment I got rays from two different angles. It isn’t really frightening, but I felt it should be.
At my cancer center you ring a bell the last day of treatment, as in the picture below. The technicians joined me and my partner. This center apparently picks staff who are very friendly and upbeat; sometimes they seem to carry one’s mood forward. The young man to the far left is in training, and he’s still permanently in a state of mild shock.
If I look uphappy it was because (1) by this time in radiation one is often slowed down and not exactly chirpy; I had had in four weeks the dosage that most women are given in six, and I count myself fortunate that I have had only one automobile accident; (2) I had been up to 2 am the night before because my child, who lives a thousand miles away, contacted us with an exceptionally serious medical problem, and my husband was getting a flight the next day to go see him; (3) I am investigating filing a complaint under the Americans with Disabilities Act, among other things. Collecting documentation of a history of alleged adverse treatment is profoundly depressing. It’s also the last thing I want to be doing.
It is astonishing what negative actions will be taken against women on medical leave for cancer treatment.
On the positive side, the Missoni sweater I have on cost 25% of its regular price, and I’m considered something of a miracle person since the radiation left my skin and breast looking almost exactly as they did before. So there, breast surgeon and plastic surgeon!
I haven’t yet gotten around to investigating whether women with cancer have more problems on leave than men do. One problem is that a lot of people get cancer after 40-50, and so their employers may be figuring that any excuse to replace them is not an opportunity to be missed. The cancer center has all sorts of advisors on these sorts of issues, so I was often suggesting people contact them. In effect, having cancer may just make one a good target whatever one’s gender.
I have an indirect connection with an organization that does documentaries, and when I get my strength back, I may look into seeing if one could be done about the women getting radiation at a major cancer center. Everyone is going on going on, and finding a way to do so. Since the group is very mixed in race, class, education and religion, the ways people were finding to keep going are very different. Many, many of them had much worse reactions that I had; one young woman of 23 was being treated for reoccurrent breast cancer, and her whole chest and much of her neck was bright red and very itchy. She will probably burn and peel for two more weeks. She is here alone, as indeed are many people who come from around the world. I gave her my name and phone number and said she could call me at any time about anything except spiders.
Another woman had cancer that also grew on the outside; she discovered it about 3 months ago, and she went immediately into palliative care. There is no hope for her survival, and managing quite intense pain is the main objective of her treatment.
If I got the documentary organized, I’d looked at a number of different things, including some of the interesting research going on at my university. But my main motivation is that I think the four weeks spent with these women forms a really valuable part of my life. It is such a cliche to find deep value in the circumstances surrounding painful and scary treatment. This time at least it was very true for me.
Next up for me is five years of what I think of as a mild poison. Bone loss, joint pain and hot flashes are its major bad side effects.
Feminist Philosophers 
Thanks so much for your most recent entry on the experience of breast cancer and medical treatment! But what is the ‘mild poison’ you’re looking at for the next five years — more radiation therapy, of a different order? Or a drug?
My mother went for the full-on mastectomy, so she didn’t have five years of anything like this.
Suffering brings or at least can bring wisdom, it is said.
(Sheltered, rich kids are rarely sources of great wisdom or insights. )
You seem to have learned from what you’ve gone through.
I’m so glad that things are taking a positive course.
The mild poison is tamoxifen or arimidex. Both are anti-estrogen and they are used if one’s cancer is estrogen driven. I think that everyone with estrogen sensitive cancer gets one or the other, with few exceptions, those largely being fairly severe health problems other than cancer.. Tamoxifen is older and I think its side effects are worse. They include blood clots that can be life-threatening.
I remember visiting Margaret Wilson in the last year of her life and rushing off to the hospital with her since she had blood clots. I remarked that I had no idea that cancer could cause blood clots, and she said that the clots were due not to the cancer, but to the treatment. I thought that was very nearly incredible. Why treat cancer with something that can kill you sooner? But it is actually what goes on.
It’s one pill a day. Some people have 2.5 years of one and then the other. Others have 5 years of one, or ten years, etc. I’ll start with the assumption that I’ll have five years of arimidex, but the stats say that it will ‘only’ reduce my changes of a reoccurrence, and won’t change the chances that I’ll die of cancer, which are low anyway. How bad the side effects are varies widely, so I’ll be asking whether having a reoccurrence would be a better risk, as it could turn out.
I’d bet your mother’s cancer was not estrogen driven. I think that can also be a reason for having a mastectomy, and even a bi-mastectomy. That will certainly reduce the risk of reoccurrence, but still not entirely, believe it or not. The cancer can come back in the scar tissue, etc. It is a very, very mean and determined disease.
SW, as always, thank you for your remarks. We can learn from these things, thank goodness.
Very moving. Thank you for sharing.
Thank you so much for these posts, anonfemphil! I think most of us have known someone — family member, friend, acquaintance — with breast cancer, but I’d also venture to guess that most of us have *not* known anyone with the courage and verve to ask hard questions, make even harder choices, and then to tell it like it is. Understanding is the first step to overcoming the fear. Thank you for your insights and inspiration.
Also: congratulations on making it this far, with so much spunk and humor! (Only *one* car accident?! Anything but spiders? Nice.)
Congratulations on coming through this.
Anonfemphil
I was admiring that cute sweater so was pleased to read you got it at a discount. Congratulations on finishing the radiation. I hope the way forward is less harrowing.
The issue of gender, medical leave, and attempts by others to sabotage one’s position rings of classic discrimination. I will be interested in your findings.
Thanks to you all for the supportive comments. I’m always unsure about writing about this all. It seems vaguely indulgent to just describe what is going on, though I remind myself that it isn’t exactly usual stuff. And I do think that that machine is impressive, so I was glad to get a picture of it on. It is actually vastly complicated and the beams that go out in, as it were, one shot are a very mixed crew that are calibrated according to the area they hit. At the high point I was really criss-crossed with lines and x-es so that the machine could be lined up very precisely. And once it is lined up, ONE CANNOT MOVE. Everyone one gets a “cradle”, which is a blue fibre-glass thing; it’s used to make sure your various relevant limbs and parts are always in the same relation. If you have a taste for the very odd, you might enjoy a picture of the way cradles are stored:
JT, I think you are right about discrimination, especially since what’s being done seems principally to harm me rather than benefit others. That is, as far as I can see.Cancer puts one on the diabled list, and that provides a lot of protections. And as you know, I also have a joint problem, which makes me permanently disabled, something that, awful though it sounds, does give one some more protections.
The very last thing I wanted to do with my life right now is to learn about all this. It is also the case that the last thing a cancer patient needs is added stress. It has physically bad consequences. There are a lot of cancer patients out there that the world is not treating well, and a lot of people who really can’t or don’t want to cope with a family member’s cancer, employers who are happy to indulge their inner meanness, and so on. There are also some just wonderful people who give themselves over to extensive caretaking.
I don’t think it is true that everyone who has estrogen-sensitive breast cancer now gets either tamoxifen or arimidex. My cancer was some years ago, but I had a consultation recently because I wanted to discuss the question whether I should be having one of the drug medications. My oncologist laid out the pluses and minuses of the treatments, and my decision not to have either form of medication was taken to be a reasonable choice — though obviously not one which everyone would take.
Cora, thanks for making this important point. I was not getting it right. My sense is that there’s a presumption one will take the hormone medication, but that can be overriden in a number of ways, and not just the one I mentioned, where it is counter-indicated by other medical conditions. There are some general factors, such as age, that are relevant. But more particularly, there are decision algorythms – with medically standard ones online – that give one the best satistically based estimates of the benefits.
The factors fed into the calculation are really interesting. I think i don’t remember the precise list, but it includes many of the following:
The nuclear grade of the cancer = roughly how agressive it is
The tumor size/number
One’s age
Whether lymph nodes were involved and, if so, how many.
What sort of margins around the tumor there were.
As far as I can figure out, the crteria for desirable margins can vary, and even some one with a mastectomy can have problemaic margins. In the simplest case, a lumpectomy with a cm all around of cancer free tissue is really good. A mastectomy may take out a tumor very close to the cheast wall, and the margins there may be problematic, for example.
The end results of the various calculation can vary. Perhaps the arimidex would reduce the changes of a reoccrrence 10% or just 3%. Added into the final decision is the fact that some people hardly notice they are taking the drug, while others feel they’ve suddenly aged 20 or 30 years.
One scenario has women who statistically have 15 more years to live gaining weight, losing a lot of hair and having sigificant joint pain. The likely alternative may be amuch more vibrant ten years. These are hard decisions to make for many of us. I discovered that one of my doctors was very surprised – given the report that appeared on line in my relatively private account, that I didn’t want significant hair loss.
The treatment for bc is often cruel, and one too often has to deal with people who seem to think survival is a simple matter. Worse still, I’ve discovered, is that in my cancer center, a team meets and plans out the entire treatment before one has any say. This means that a discussion of alternatives is really an arguments for their decision. That’s not so bad unless factors such as one’s values are quite different from theirs.
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