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.
Feminist Philosophers 
Even if they are trying to help you, that hardly indicates that you should not complain.
One of the many things that basic feminism teaches us is that people’s “good intentions” are often paternalistic or guided by unconscious needs to control or to have power over others, as in, to use a famous example, Ibsen’s Dolls’ House, where the husband only has the best and noblest intentions.
Being a patient does not mean that one has to give up one’s vital projects and one’s critical sense.
Sometimes, you have to pretend to be grateful or to humble or to be dumb.
You don’t want to having someone who finds you to be a pest or a pain performing a delicate operation on you.
People’s patience with patients is not unlimited, as you say, and it is often better to have the very flawed support of others than no support at all.
The worst thing in my limited experience is people’s tendency to rationalize serious illness by blaming the victim: he had it coming because of x……
This universe is a lot less just and rational than people who lead comfortable and healthy lives like to imagine.
A friend of my sisters who had cancer described it as driving down the road minding one’s own business and being hit by a huge truck.
Doctors are not always trying to help. It is a guiding principle for every doctor I’ve met, but it is not what they’re always doing from moment to moment. Sometimes, when a busy doctor is going through her day ticking off, in her head, what she wants to do regarding cases x, y, and z, she’s thinking about her own preferences, her usual procedures, and (if she’s the doctor in my family, haha) how much she dislikes anyone ever telling her differently. I love my doctor-relative, but when anyone disagrees with her in her wheelhouse, she gets mad the same way I do when someone tells me what to do in the classroom. Neither of us are really thinking about how much we try to help others when we get offended like that. We’re thinking about the way we like to do things, and our umbrage at correction from people we are certain know less! (I’m not defending this; I’m saying it’s a character flaw which I share.)
SW, in response to your number 1:
I completely agree. What I am worried about, though, concerns the social effects of revealing that one is not grateful. Dealing with someone with cancer is difficult enough, and I don’t want to end up dismissed as a pest or pain.
ProfbigK, why is it that I find it difficult to see you going beserk at a student who disagrees?
Oh, I wouldn’t go berserk on a student! But you should see my grouchy appearance when I’m told by an official what learning outcomes should be on my syllabus or what tech I ought to use. My partner can attest that I get excessively heated in my reactions.
I have had some difficult experiences with doctors while trying to handle a chronic health problem, and ultimately found a doctor who is a truly excellent physician and a kind, sensitive human being. Are you locked in with the doctors you have been talking with? What you’re dealing with is obviously so difficult already that it’s a shame you have to struggle to get these doctors to treat you respectfully.
I’ve had a similar experience with a doctor, although my health situation was not as serious. I had severe menstrual bleeding. She wanted to give me a hysterorectomy. I thought that was overkill. She thought, and basically said, that I was being irrational — since I said that I didn’t want any kids, who needs a uterus? We argued back and forth about it. I finally had to do my own research and proposed an alternative, less invasive surgery, which she grudgingly agreed to. She later admitted that it made sense to try something less invasive. She warned me, though, that if something went wrong in the surgery that she still might need to take my uterus out. I then insisted that my partner be consulted if it came to that because I still didn’t really trust her not to substitute her own values on what the right thing was to do, rather than follow my values. To make a long story short, the surgery went well and I still have my uterus. Every time I see my doctor, though, she suggests that I should just get the thing taken out, since my bleeding is still a little wonky. (Take it out, like removing a wart, I guess). And I keep thinking I need a new doctor.
Anyway, sorry to blab about my own situation. This is my way of saying, good for you for sticking to your guns. It’s your body, and your values should prevail. If you need to get a new doctor, then do so. And to answer the question you asked — if she had needed to take out my uterus, would I be glad that I had still tried to have the lesser surgery. YES. Absolutely. I try to live my life with a “no regrets” policy; if I had gone for her plan, I would always have wondered if I had done the right thing.
Best of luck to you with your decisions and with your surgery. On a semi-related note, I have a friend who had breast cancer and the cold-capping worked very well for her (she still has all her hair), even though some doctors think that it’s nutty.
Beth, I am locked in now in that I think starting over would be even more stressful. I cannot tell you the hours and hours I’ve invested, but it is a lot. Two whole days this week, for example. It was in fact on Monday that I encountered the mad PS; had that been early on, I might well have walked.
My spouse goes to every meeting with me, except for the psych consult, and so absorbs some of it, and now I want to get it over with. Or so it seems today. Also, the surgeons are very skilled, and I’ve already been to one who was much less knowledgeable.
Justanotherfemalephilosopher, I am shocked. I’m doing much the same thing with my surgery; no decisions without input. In fact, without my input, so I may find myself having to go back under the knife. But the thought of waking up altered in some very unanticipated way was awful. Also, the major thing they might decide they need to do would be the lymph nodes, and losing all of them can have really bad effects, up to losing the use of an arm.
BTW, it seems I am fortunate enough to be at stage zero, though the pathology on the lumpectomy may change that. Hence, I won’t have chemo, thank goodness, unless the pathology turns out quite different from what is expected..
Justanotherfemalephilosopher, my mum had the same experience with the forceful and repeated recommendation of a hysterectomy when there were alternatives available, because she was ‘hardly going to use it now, right?!’. A real indicator, I think, of the extent to which the body-as-object is what’s really focussed on in medical treatment…
Anonfemphil; wow, I admire your capacity to withstand such fury from a doctor. It really is inappropriate, and hardly conducive to good care. I’m so sorry that you’re having to negotiate that level of hostility on top everything else. It underscores how vulnerable we are when it comes to our health, doesn’t it? I don’t have any suggestions really, but fwiw, a stranger on the internet is sending her best wishes… Thanks so much for sharing.
WP, the man is a major as*hole. I will think of finding a way to convey this, but not while he holds the knife.
And many, many thanks for reading.
Thanks for sharing your experiences around your treatment. I just wanted to mention a TV show, which you may have heard of/seen, but of which I was reminded in reading this post: The Big C. Laura Linney plays a woman, a teacher, who is diagnosed with terminal cancer, a situation much more dire than yours. At least the first season, which is all I have seen, is premised on her owning this diagnosis. There is a subplot of how she thinks about her treatment options — none of them are remotely proven. Of course she is able to push back against her doctor’s advice precisely because her case does not have any established course of treatment, but the exchanges are still interesting.
It may well be difficult for you to engage with a show like this right now, but there is some fine acting, and Laura Linney’s character is anything but a passive patient.
My mom had some similar problems when she was diagnosed with lung cancer. It did seem that some of the doctors were unable to accept any criticism or challenge to their opinions and I think she was considered a “difficult” patient. I’d try very hard to find a doctor who’s willing to work with you and respoect your opinions. It sounds, though, like you’re pretty boxed in now time-wise.
Okay – I have been in the same situation as you just over a year ago. First thing – the staff of the BS/CS were always lovely to me but I quickly realised they were all akin to professional Stepford Wives, with a hero like crush on their employer. I took no account of what they said as a result. The admin person you spoke to who essentially “made up” a critical medical fact [wrongly] deserves a formal complaint about incompetence – assuming they possess a medical related qualification and is a member of a professional body with professional standards! Ditto the social worker who appears to be in the blame game about your breast cancer. You may like to ask the SW if the same speil is given to kids with cancer? I would suggest to this idiot that the largest statistical factor in having breast cancer is, in fact, being female, so they have a remedy to cure that, please let you know asap! I sense an increasing trend in blaming women with BC for having the disease – I wonder if their AIDS patients would meekly accept this approach? Just park and dump both of their advices and get on with the main game.
Re the aesthethics of BC surgery. My tip is to first get a copy of your histopathology report – in fact you should as a matter of course insist on all reports, letters, referrals etc being automatically copied to you for your own file. I do. Its been invaluable in situations where something has gone astray as I have my own copy all neatly filed in reverse chronological order. You need to know not just the type of BC you have [mine was also very rare – tubular – about 1% and interestingly with really favourable statistics] find out if it is invasive or non-invasive. The latter is more serious.
Next, it is quite open to you to elect to have a lumpectomy, have it done and then await the results of the pathology on the excised tissue. This gives you a lot more information. Some critical information relates to whether or not there is necrosis present – if there is, its more dangerous. The ki67 score can also be relevant – this is the rate at which the cells are growing. Very slow growing ki 67’s tend to be less dangerous and often mean a recommendation for no chemo, no adjuvant therapy and so on. I was in this category. Other results like mitosis score are also important. In relation to surgical margins, most literature recommends at least 1-2 mm – not a centimetre. Have a look on the ruler to see how big you tumour is and how big with 1-2mm margins all the way around. Carve it out in butter or plasticine so you appreciate the size. After I did this I asked my BS NOT to carve conservatively – I wanted the largest margins he could get. I ended up with margins of 16-17mm all the way around, which is huge. My reasoning – all the scientific studies I read which stated 90% of BC recurrences happen in the same quadrant as the original tumour therefore the more taken away from that quadrant, the lower the recurrence rate. My huge margins later meant I can the option of omitting radiation. However, there are two other factors here – one if the current size of your breasts – the bigger they are the more can be removed and the other is the size of your tumour. Mine was 6mm and in large breasts [DD] so again these were workable for me.
Can I say my BS started to go on and on about breast appearance till I cut him off saying “I’m not my right breast. No part of my intellect, personality or sexuality reside there. I place living far above the appearance of my breast and in fact, I find scars interesting and attractive.nI want it gone and I do not want you to worry about miniscule margins. Go for it” I saw this look of relief flood his face. It was transformative. I am sure he was accustomed to a lot of hand holding over this issue. We were then able to spend time on what mattered – disease free survival. If you are concerned about appearance, ask to see some photographs of procedures [all procedures] before, during and after so you get a clear idea of what is meant. I did and it helped. Has you medical advisers talked to you about what happens if you agree to the mastectomy and reconstruction and after they remove your lymph nodes, has he mentioned if they find cancer in them, and you need radiation, you are likely to need the reconstruction removed prior to having RT, then another operation or two to restore it? This has happened to three friends of mine who were all told mastectomy with immediate reconstruction. They ended up having multiple operations, and apart from the cost and pain involved, they felt ripped off that they were never told the real risks.
As for male versus female doctors – I could not care less. All I care about is competence and having a clear line of communication with those assisting me and the lowest infection rates for procedures [both the doctor and the hospital]. No point in worrying about breast aesthetics and then acquire a nasty infection during the procedure which trashes any notions of cosmesis! I made it clear to all involved I wanted competence and lowest infection rates as my highest priorities – the ability to hand hold does not rate with me anywhere near as highly. I was offered a relatively less experienced female breast cancer oncologist who was great with hand holding and took a lot of time with patients versus a no time wasting, blunt to the point of insensitivity and half deaf professor who had been doing this for 30 years and attended all the major international conferences. I went with the old guy. I’m a feminist. Its not about male vs female, its about where I place my priorities. You don’t have to love the person who is going to cut your cancer out – its a professional relationship, not a nascent love affair. Sometimes in professional relationships those that tell us what we don’t want to hear are in fact acting in our best interests – other times they are just abusive power mongers using bluff and pressure as tactics to force you to do what they want. The trick is working out which these people are. I would even put up with a lot of irritations to secure the most competent and with the least infection rate.
Lisa, I’ll try to find the show.
Coco, thanks so much for the very useful comment. No MD has mentioned infections. I found this informative piece on Breastcancer.org:
More than 1 in 20 women (a little higher than 5%) developed an infection at the site of the incision after breast surgery.
The risk of infection was different depending on the type of surgery that was being done:
4% for mastectomy with no reconstruction
12% for surgery with implant reconstruction
7% for reconstruction surgery using skin and/or muscle from the belly area
1% for breast reduction surgery
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