Breast cancer: some psychological questions

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.

O thanks, NY Times

Married men have better health than unmarried men.  Sounds like old news, but there’s an interesting new Canadian report on how married men with a heart attack on average get to the ER faster than any other group.  What’s the NY Times article call the better health of married men?  “The Nagging Effect.” 

Married women with a heart attack do not get to the ER faster.

UK doctors and the right to opt out

A survey of medical students has found that almost half believe doctors should be allowed to refuse to perform any procedure to which they object on moral, cultural or religious grounds, such as prescribing contraception or treating someone who is drunk or high on drugs.

Abortion provoked the strongest feelings among the 733 medical students surveyed, according to the study in the Journal of Medical Ethics. “The survey revealed that almost a third of students would not perform an abortion for a congenitally malformed foetus after 24 weeks, a quarter would not perform an abortion for failed contraception before 24 weeks and a fifth would not perform an abortion on a minor who was the victim of rape,” said researcher Dr Sophie Strickland.

In the UK, abortion is allowed up to 24 weeks if two doctors agree that it is medically necessary. (This is, probably deliberately, open to interpretation: one interpretation is that an abortion is medically necessary if a woman wants it. A key part of the reason is that the risk of continuing the pregnancy is greater than the risk of aborting: early abortion is pretty risk-free, and childbirth is more risky.) But if we don’t have enough doctors willing and able to perform abortions, it won’t be properly available.

Also, although the article just skims over it– I’m really shocked to hear there are medical students who want be allowed to refuse to treat a patient who is intoxicated. This isn’t a matter of refusing to perform some particular procedure that the doctor believes to be wrong. That’s hugely problematic, but at least I understand the reasoning. This is a matter of refusing treatment *in general* to someone because they have engaged in legal behaviour.

For more, go here.

Hume on the Cancer Ward: What creates benevolence zones?

Hume thought that we can pick up others’ feelings and that doing so inclines us to act.  In particular, feeling their pain moves us to try to relieve it.  The connection between acquired feeling and action seems to be quite direct.  That is, it isn’t mediated by thoughts of how one will appear to others, or indeed any such thing.

One worrying feature of the account is that if one does really pick up others’ pain, doesn’t it make sense to try to get away from them?  I suspect a lot of us do react rather like that; I have always assumed I’d be a reluctant and not very helpful visitor on a ward for sick children, for example.  So what is the connection Hume thinks exists?

But in addition to that problem, we may feel that there’s another problem:  How does someone’s benefit end up one of one’s own goals?  Hume recognizes that we may be helpful for all sorts of self-regarding reasons, but he also thinks most of us have the capacity for co-feeling – for what he calls sympathy – and that that leads to benevolent, helpful action for those in distress.

We now have a model of how we produce actions that are basically or primitively rewarding, and Hume’s thought could be understood to say that human beings find helping those in distress primitively rewarding (other things being equal, of course)..  The neuroscientific account, to put it very roughly, says that if something is primitively rewarding, then you get a burst of dopamine when you first do it.  After a short while, the dopamine burst occurs in reaction to reliable antecedents of the reward, so you are alerted when the chance for the reward is coming up.  Among the primitive rewards are things like food and sex, and, maybe, helping others out when they need it. 

I’ve thought about Hume’s views, and even written about them, and it was on my mind when I stepped foot for the first time in MD Anderson Cancer Center in Houston, Texas.  US News and World Report has it the top cancer center in the US, and it is – really and truly – something else again.  It covers 25 square blocks, all of which are devoted to clinical and research work on cancer.  It also has a quite remarkable ethos.  Everything is supposed to be about the patients.  For example, when you go into their parking garages, the best and most easily available places are for ordinary folk.  Every medical facility I’ve been to other than this has the first four or five floors reserved for doctors and other personnel.  (I was at first quite suspicious and worried about getting towed.)

Where I was you take the elevator from the garage to the second floor, where you find another distinctive mark of MD Anderson:  tons and tons of nice, friendly volunteers who offer to help you find your way around.

And there are also a large number of cancer patients, some in perhaps tragic situations.  You can see family clusters, with a mother, father, with two young people in their 20’s; one’s got the hat on and so may well be the patient.  Small children are wheeled around.  One older man could hardly move; he was heaving, having a hard time breathing.  His wife told the nurse he thought he had a clot in his leg, a not impossible result of his treatment. 

And none of it seems ugly and distressing.  Everyone seemed helpful and nice.  And one wanted to help as one could.  It seemed to me very remarkable.  And I tried to figure out what was going on.

I’d love to know if anyone else has been in what one might think of as a zone of benevolence.  What could cause it?   My latest hypothesis is that many people have their defenses lowered.  This is not at all like being in a crowded restaurant, where people are turned inward to themselves and their small groups.  For example, I pulled something on an alarmingly reclining chair and it may a loud noise and rearranged itself.  One woman left her patient companion and came over to offer help.  Of course, she might just have been looking for diversion, but I’m not sure that we run about helping people when we’re bored.

Another might be that there’s really extensive gratitude for the excellence everyone seems to aim at.  The reviews of the hospital talk again and again about excellence and compassion.  In fact, I’d dismiss my own impressions as probably fleeting, except for the fact that a lot of reviews from people who have been involved for a long time say much the same thing.

If it were excellence and compassion, perhaps we could aim for something similar in our universities.  Well, why not!?!

Girls will be boys

Here’s an article in the Hindustan Times about a new trend in Indore, a big city in the middle of India, to perform genitoplasty on girls, to turn them physically into boys. It concerns hundreds of girls (aged 1-5) per year. Officially, the procedure only takes place when the girl has undescended testes and external female genitals including a vulva. However, there are strong indications that there is a widespread abuse of this procedure because the parents want a boy instead of a girl.

According to the article, there are very few cases known where boys get genitoplasty.

Here’s an article explaining about ambiguous genitalia, which is allegedly what those girls get the genitoplasty for. The prevalence of ambiguous genitalia is about 1% of live births, and only 1-2% of those are ambiguous enough to warrant medical attention. I get the impression from the articles that it’s more often that girls resemble boys physically than vice versa (and apologies for the sloppy use of the terminology for boys and girls, but it’s for simplicity’s sake), so it is very odd that the genitoplasty only happens with children who appear to be girls.

Well, not so odd when it is taken into account how desperately people want to have a boy instead of a girl in that region, but that doesn’t make this practice any less horrifying.

(Thank you @exhibitontiz)

War on the disabled

The Goldfish drew our attention in comments to a blog, which campaigns against the government’s War on the Disabled, a.k.a., the government’s ‘benefit reforms’. Where’s the Benefit? has detailed information about those reforms, and descriptions of what it’s like for those who are too ill to work, but who will soon be having/have already had their benefits taken away.

Are you fit for work?

Readers will probably be aware that the UK government has redesigned the capability test that determines whether or not you are fit enough to work, and so whether or not you need incapacity benefit. The aim is, of course, to reduce spending, by taking away benefits from some of those currently receiving them. There has been widespread criticism of the way in which this has been done, with some people reduced to such a state of desperation that they have taken their own lives. The following letter printed in Friday’s Guardian aptly illustrates how bad the system has now become. Read it and weep.

The government says it is committed to a “fair and accurate” work capability assessment. The distress and injustice caused by this new system needs to be publicised far and wide.

My brother died last week of kidney cancer. He was diagnosed a year ago and at Christmas was told he had about four months to live. In the spring he was summoned for a work capability assessment (by this time he had two brain tumours) and found fit for work. In addition to everything else, he became anxious about losing the small amount of money he was living on. He was asked to go in to the jobcentre for an interview but was too ill at the time. On 19 May he received a letter from Jobcentre Plus telling him he was to be treated as having limited capability for work. The medical officer overseeing his case had advised that “death within six months is unlikely to occur due to the client’s cancer” and there would be no “substantial risk to his mental or physical health if he were found capable of work-related activity”.

He died six days later, having been unable to get out of bed for four weeks. What work were they suggesting he was capable of? He asked: “What have I paid national insurance for if not help to pay the bills and feed me at a time like this?”

Claire Debenham

Brighton

You can read more about the disastrous new system here.

M.E. Awareness Week

Myalgic Encephalomyelitis – also known as Chronic Fatigue Syndrome, and Post-Viral Fatigue Syndrome – is a chronic and debilitating condition, which affects its sufferers in a range of different ways, causing extreme fatigue, muscle weakness, digestive problems, heart failure, pain, and sometimes death. Most of those affected can no longer work, although some can still manage a part-time job. Some people with the condition are affected severely and become bedbound for years, unable to wash themselves or go to the toilet unassisted. Doctors have little idea what causes it, and there is currently no cure, although some people do recover. Despite an increase in awareness of the condition, it can still take a long time to receive a diagnosis, and despite its severity, M.E is not always taken seriously by medical professionals. The problems are compounded by a lack of research into the condition. You can read more on the M.E. Research UK website. The Action for M.E. webpage has suggestions for things you can do to help. Finally, for an insight into what it is like to live with severe M.E., and how you may be treated by some members of the medical profession, have a look at this site.

“Advance Directives”: Would you sign this standard form?

I am assuming that the issue I’m about to raise is not purely personal, but rather one that could affect most of us and that feminists probably have illuminating things to say about it.  I take it that the form I’m describing below is absolutely standard.  I am now inclined to think it would be a bad idea to sign it, and I cannot understand why it is the standard form, when the general advice is that one sign one.

So I am looking at with the possibility of filling out an “Advance Directive,” which specifies what I want to happen when I am “unable to make medical decisions about myself because of illness or injury.”   My understanding is that the directive has legal force and it has to be notorized, witnessed and so on.

It has two major clauses.  One starts “if, in the judgment of my physician, I am suffering with a terminal condition from which I am expected to die within six months, even with available life-sustaining treatment provided in accordance with prevailing standards of medical care.”  The second is similar except that it is about being in “an irreversible condition so that I cannot care for myself or make decisions for my self and am expected to die without life-sustaining treatment…”.  One’s choice is to keep the life-sustaining going or to have it cut off, with the understanding that suffering is to be minimized in the latter case.

The picture that initially comes to mind is that one is lying comatose and on a ventilator.  However, “life-sustaining treatment” can cover just medication.  Blood thinners needed to prevent a stroke presumably can count as life-sustaining.  Procedures like dialysis would also be included, I think.   “Irreversible conditions” include those that can be managed even if not cured. 

The “my physician” sends off alarms for me.  The directive gives one physician the power in effect to decide whether my life is worth living.  One might think that the directive applies only when one is mentally incapacitated, but it is more accurate to save that it applies only when someone decides one is mentally incapacitated.  Nothing specifies whether the incapacity is temporary or permanent.

In addition, there are situations when one can have a temporary mental inability; for example, in the case where one arrives at a hospital incapacitated from a stroke, damage from which one can nonetheless be lessened greatly with swift medical intervention.  Apparently cystitis can make old people mental incompetent as can being moved around a hospital, which the elderly can find extremely disorienting and confusing.

Given the evidence suggests that white men are more likely to have life-sustaining interventions, I think there may be a concern with this standard form  for people of color, white women, and perhaps most elderly. 

I should add that I have had one personal experience with such a situation.  My 86-year-old father was in a hospital because he had a heart attack.  He was sort of minimally rational and got disoriented when he was moved around.  The question arose whether he should be discharged with life-saving medication that had a particular downside or not.  He was completely and entirely cut out of the decision-making even when he became much more rational. 

So what do you think?

ewwwwe – one perspective on why women have problems as surgeons.

About 50% of the students going to medical school are women, but only a third of them want to become surgeons. Why is that?

[It is] in part because of a perceived male bias, negative attitudes of surgeons and a lack of female mentors. Once in practice, studies have shown, well over half of all women surgeons report feeling demeaned, and nearly a third say they have been the objects of inappropriate sexist remarks or advances. …
Dr. Diane M. Simeone, a professor of surgery at the University of Michigan who was a co-author of a recent article on barriers faced by women in academic surgery, agrees. “There still is a lot of gender bias in surgery, and I have seen it myself on multiple fronts,” she said

Of course, to a woman in philosophy, that can seem even hundrum. However, one particular event has brought things to a head:

A Valentine’s Day editorial in the official newspaper of the American College of Surgeons has set off a firestorm of controversy … The editorial, written by Dr. Lazar J. Greenfield, an emeritus professor of surgery at the University of Michigan School of Medicine and president-elect of the American College of Surgeons, extols the mood-enhancing effects of semen on women. It begins with a reference to the mating behaviors of fruit flies, then goes on to discuss studies on the menstrual cycles of heterosexual and lesbian women who live together. Citing the research of evolutionary psychologists at the State University of New York, it describes how female college students who had been exposed to semen were less depressed than their peers who had not, concluding: “So there’s a deeper bond between men and women than St. Valentine would have suspected, and now we know there’s a better gift for that day than chocolates.”

Ewwwe. Ewwwe. Still, it can be good to get a problem infocusl