Breast Cancer: the surgery

(One part of this is not meant for the squeamish.  The indented part, one para above it and two below it might be a bit difficult to read, though honestly there isn’t any blood or anything.)

Well, been there, done that.

I have an unfortunate early history of being resistant to anaesthetics.  I realize that is almost unbelievable.  I have heard from medical doctors that they think I am not trying, as though one wants to be awake for surgery.  In any case, because of this the hospital recommended that I take some xanax before I even showed up for the operation.  And it may have been that pill which caused a puzzling recurring problem throughout the day.  What in the world does one say to the very many people who ask one, in an extremely cheery voice, “How are you today?”

Picture this:  it is 9 am and I’ve had no coffee or tea.  I go up to the admissions desk in a major cancer hospital, which is in a room with a lot of people getting cancer surgery.  This is not a happy place; there is no laughter or even really talk.  And so the admissions person asks, “And how are you today?” in that very cheery voice that indicates really that one needs to say, “Just fine, thank you.”  I simply couldn’t manage it.

So I said that I was feeling terrible, but thank you anyway.  She looked so surprised and taken aback, so something suggested to me I should say, “Actually, I am just joking.  I am really looking forward to have parts sliced away.” 

I really dislike the idea of making anything like fun of people trying their best to fulfill a function.  So perhaps it was the xanax.  But throughout the day people kept cheerily asking me how I was.  And then looking very taken aback when I said what I thought.   And then I’d try to explain.  Mind you, not one of them refrained from telling me what they thought, as when my surgeon shared the fact that she did not feel good about the operation.  She had thought a mastectomy was a much better cosmetic operation, though in the end in fact she obviously spent some time trying to get the best result with my preferences.  I thought she did a brilliant job. 

There are two difficult pre-op things they do.  One is to bracket the area to be excised with needles, as guidlines for the surgeon.  The other is to give one radioactive dye to trace the transmission from one’s breast to the lymph nodes.  The first involved using a mammogram machine cranked much more tightly than they do for mammogram and putting the needles in:

 Using a sterile technique and local anesthesia (1% buffered lidocaine), two needles (7 cm Kopans and 3 cm Hawkins ) were used to bracket the area in question in the upper outer quadrant of the right breast.  The approach was lateral to medial.  Following adjustment of the needle tips, the hookwires were deployed without difficulty.
  
The patient tolerated the procedure well and proceeded to the Operating Room in good condition.

There is one possible factual error here; I did not consider myself in good condition when it was over.  It was just awful.

What they do is push the needle in for a bit, then take a picture and then readjust, bit by bit.  The lidocaine does not cover 7 cm in; it seemed just to be topical.  I’d say the pain was close to that of childbirth.  Not everyone minds it so much, you should know. 

Apparently, putting in the dye is much worse, so they used a sedative.  In fact, it did not put me to sleep and apparently I objected all the way through, but any memory I had of it is totally gone.  It does funny things to one memory, the nurse said.  By that time, I’d had enough to remember, and I was interested in the idea of some part of one’s memory being totally just not there. 

I was thrilled to wake up from the operation itself with my mind clearly in tact, though missing a bit of memory.  I had just about no post-op pain, which now means I have a good supply of the dangerous and desirable hydroco-something or other.

The pathology report that I got yesterday had the terrific news that the margins were very good.  There’s some disagreement about how wide the margins should be, but this hospital tries for 1 cm, which is quite wide.  For now the cancer is gone and there is no need for further surgery. 

The rest of the news was bad and indeed alarming.  Though the cancer was largely dcis (ductal carcinoma in situ) and so encapsulated, scattered throughout that area were”innumerable” points of nasty bits that were microinvasive or outright invasive.  It was, in a word, multifocal.  None had spread to the lymph nodes, which was a huge good thing.  But mammograms and ultrasound were not picking them up, or at last nothing like all of them.  In fact, it took an MRI to register about 1/2 of the affected area. 

The official mammogram recommendations are now for testing every other year.  In August of 2010 I got a clear mammogram at a breast clinic which has a great deal of experience.  I don’t know where the invasion would be by 2012, but I might well be some ways toward its spreading at least into the lymph nodes. 

My partner, bless him, has stayed by my side through all of this.  That he somehow got the idea that it would be helpful for him to start telling me what to do seems now minor.  I think it was very hard for him to have so much so out of his control.

Breast cancer can leave one medicalized for the rest of one’s life, and in my case it may well do so.  The next steps probably will be radiation therapy and then hormone therapy, and frequent testing.  My version is hormone sensitive, so shutting down hormones can slow it way down.  Of course, the cancer officially counts as gone, but as many who suffer from breast cancer will tell you, the retoric about curing cancer and the reality of it are very far apart.  Of that more later.  There will be another reason to wish pink away.

———————–

This post is about the experience of one person who, though a regular blogger here, decided to remain anonymous.  The first one is here.  The second is here.

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.

Breast Cancer: first decisions

I am a regular blogger here, but I want to make these posts be about having breast cancer, and not about me, and I don’t know how to describe what I am learning except in terms of my experience.  So I’m hoping I’ll drop out if you don’t know who I am. 

I am learning a lot, some of which may sometime be of use to readers here.     If you’ve gone through having breast cancer treated, you may have a different take.  You may also think I am wrong about something.  Believe me, I welcome disagreement as long as our “be nice” rule is followed.  Though I want the post or posts to be about what I’ve learned, in fact what I am learning may apply just to me or to people like me. 

One thing I know, for example, is that my attitude would be entirely different if I still had young children.  Another is that my attitude to some issues might be very different if I were looking for a serious male partner.  As things are, cosmetic issues are low on my priorities and quality of life issues are very high.  I’d be more willing to risk bad side effects if there were young children to see to; I’d take my surgeons first advice if I were looking for a partner, for example.

So let me mention a few preliminaries.  One is that the news one has cancer can suddenly put one’s life in a perspective you haven’t been able to imagine.  I had often wished I could follow the advice of imagining what it would be like to know you had only a short time to live.  I just couldn’t really make it real.  But the delay between the news you have breast cancer and the news about how far it has spread was much more than enough:  within about 8 hours I had done a first assessment.  Here is what is most important to me that has been done and the repairs to relationships that have been made, here is what needs to be done, here is what I may have to give up thinking I can ever do. 

The cancer I have looks to be early, but it is multifocal, which means there are two or more locations for it.  Though there is just a tiny bit of invasion so far, it is an invasive type.  The big question for me was whether I should have a lumpectomy or a mastectomy.  The first surgeon I saw didn’t know about the second tumor; I went for a second opinion to an altogether much higher grade cancer center, something with pluses and minuses.  The second surgeon was clear:  it should be a mastectomy.  In fact, by this time I had had a lot of appointments, and had realized that my blood pressure could go very high – with 180 as the top figure – when things turned to questions about how much longer I had to live, whether I could lose the use of my arm, etc.  So I took a reasonable dose of xanax, which may be why I didn’t quite register the problem in her reasoning:  Since the cancer has two locations, a lumpectomy would not give a good cosmetic result, so I should have a mastectomy.  Plus she is well known as a world class surgeon and I was still totally stunned by what was happening.

So when I went to revisit the decision on the web, I found out that countries vary for comparable cases on whether one has a mastectomy or a lumpectomy.  The rate for a mastectomy in eastern Europe is the highest, if I remember correctly, and that in NZ and Australia the lowest.  The US is a bit high, I think.  And there is some concern that there is a kind of national consensus that takes place among surgeons.

One thought that occurred to me was that no one says “the operation is going to leave your leg looking cosmetically undesirable, so we should just cut the whole thing off”.  So what’s the difference between a leg and a breast?  Function, one might say.  However, besides the obvious breast feeding, there are certainly things with function that can get damaged or taken out with a mastectomy.  So in fact one begins to think that the cosmetic result is actually very, very important for some of the surgeons planning to do the surgery.  And indeed my surgeon was really extremely surprised that I might not care that much about the cosmetic results.  She suggested a psychiatrist, in the nicest way possible.  And to be perfectly fair, I may have said I’d rather be dead than have a mastectomy, or something equally alarming.  I have little enough experience of doctors doing what I want, and I have the uncomfortable feeling that I have learned that having a little outburst can change the odds.

I have discussed the situation with women who didn’t realize they could push for a lumpectomy and others who did realize but let themselves be talked into a mastectomy.  They were not best pleased.  I also know of younger women who have had preventative mastectomies and are really happy with the results.  If I were 30 and my concerns had to do with living for children and cosmetic results, I might well be too.  Basically, you are going to be a C or more, however uneasy I as a feminist feel about seeing that as an improvement.   In fact, let me  close with a video that really does affirm that a double mastectomy need not at all be the end.  It does, however, require courage. 

The women in the above video made one a year after her diagnosis, and you might want to see it too:

There are alternatives to the reconstruction route she took.  You can have skin taken from your back or your abdomen to create breasts.  In the latter case, you will also get an improved abdomen, I note crossly that they always say.

So the lesson for this post is that there may be more options available, and more factors to consider, than you’ll find out from your surgeon.  Next time I’ll mention one of the downsides of a very big center full of hyper-specialists.  A hint:  you know how students can get you worried when you hear one  explain to another what you said?   Well, at a big center in between you and the surgeon may be a student!  O no!  I think they’ve decided to cut the student out in communication with me.  We were probably both very traumatized.

And of course at some point there are the lymph nodes, on which I’ve ended up taking a very firm stand.

She eats, shoots and leaves

A reader has sent us an interesting question about how women show up in philosophical examples.  He wishes to remain anonymous, so responses here please.

 I was wondering if anyone has conducted any kind of study (even informally) of women, both real and imaginary, featuring as examples in philosophy papers. I ask because I’ve recently gotten annoyed with the amount of times that women feature only in passive capacities, or as victims, in papers that I read. Thinking about the field I am most directly acquainted with, it’s really hard to think of examples of women featuring in examples in more positive ways. Because of the size of the literature it’s hard to know whether this is commonly occurring, or just common in some subfields.

That old mind-body problem

Sallie Mae offers various savings/insurance programs for the education of one’s children.  According to the NY Times:

… earlier this month, it added a curious product known as tuition refund insurance, which can make you whole if an ill child must withdraw from college sometime during the term.

The insurance, which Sallie offers in partnership with Next Generation Insurance Group, a company it recently bought a stake in, doesn’t treat all sickness equally, though. If a student withdraws because of a physical illness or injury, a family gets 100 percent of its money back. People who leave because of mental health problems, however, get only 75 percent back.

So mental illness is less real and mentally ill students are less worthy.  It is hard to believe this is actually going on. 

It might also be good to  take a critical reasoning class through such an example.  There’s a switch from the mind as higher than the body to the mind’s illnesses being less worthy that is should not be  completely obvious to students however familiar the move is.

Murdoch and Cameron: Symptom or Cause?

Some time ago, when I first moved to the UK,  it was common to see and hear wide-ranging condemnation of the United States from just about everyone in the UK, or so it seemed.  The criticisms were also usually completely general.  It would be horrible to live in America, for example, because there is no place to walk, the sweet librarian at one of the Oxford colleges maintained.  American universities are not really what you’d call universities, the man repairing a plug in my bedsit explained.  Never mind American politics, culture and food, along with the fact that we all seemed yellow, apparently.  Unfortunately, what with Nixon, the Viet Nam war and all, one could hardly disagree with a lot of it.

I think the op-ed from Roger Cohen in today’s NYTimes is the first time I’ve seen a comparably breathtakingly vicious attack on the UK in a contemporary US newspaper. 

But it is not only Cameron who is in the sewer. The culture of the United Kingdom as a whole has been reeking pungently of late — its venal, voyeuristic, reality-show-obsessed, me-me-me nature thrust under the magnifying glass by revelations about what the tabloid press would do to satisfy the prurience of its readers, hacking into phones at any price, even the phone of a 13-year-old murdered girl.

It may be debated to what degree Murdoch created this culture, or reinforced it, through his ruthless, no-holds-barred approach to journalism — and its ultimate deviation into criminal activity….

The United States, after all, has been doing its own good impression of life in the political sewers recently. Republican ideologues with no notion of the national interest do their brinkmanship number as the country hovers near an unthinkable default. The only thought in their heads seems to be: How will all this play next year in the election and how can we hurt President Obama without being blamed for it?

Is the calculation of these Republicans that different from Cameron’s? It’s all about the next news cycle, and spin, and ego, and where the money for political campaigns is, and a total absence of judgment. What it’s not about is responsibility and the commonweal. …

Something deeply insidious and corrupt is at work that has been on view in both Britain and the United States. It involves the takeover of politics by money and spin and massaged images and privileged coteries. It is the death of statesmanship.

And the US equivalent of the purient readers?  What do you think?

Better than Profumo? Or just wishful thinking?

Time magazine seems ready to help Cameron leave the government. I hope the British readers visiting here will get this all on the right track. Here’s Time:

David Cameron presented himself to British voters as the candidate of change. He certainly hasn’t let them down. The Prime Minister can claim personal responsibility for triggering a series of unexpected and convulsive changes to public life in Britain that have left Britons, in the words of one habitually understated government official, “gobsmacked and agog.” Over just two weeks, the turbulence has toppled Britain’s top cop and thrown London’s Metropolitan Police Service (widely known as the Met or Scotland Yard) into crisis, shuttered the nation’s biggest Sunday newspaper, led to the arrests of some of the most prominent names in journalism, revived the moribund career of Labour opposition leader Ed Miliband and shaken a global media empire to its foundations. And this is only the beginning as questions mount over the damage to Cameron’s own credibility.

Read more: http://globalspin.blogs.time.com/2011/07/18/call-scotland-yard-britains-prime-minister-is-in-deep-trouble/#ixzz1STqDWdmK

In case you are wondering about “Profumo,” wiki’s not bad on it.

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!?!

The sunday cat thinks, “Who Knew?”

Foxes and trampolines do mix!

An african american women’s experience in an engineering class

I was going through one of those routine insurance checks when, on hearing I am in both philosophy and engineering, the woman taking my data told me about her daughter’s experience at another Texas university.

Her daughter has wanted to be an engineer since she was a little girl. A college education for her has meant a combination of scholarships and loans. In order to save money, she decided to go to a community college near home for two years and then transfer. So in her first class at a university, her professor asked about her background. When told he said, ‘Houston Community College can’t teach you anything. You don’t belong here, and I’m going to get you out of this class in ten days.’

Of course, the science community has supposedly woken up to the fact that the country can’t afford to trash the talents of women and African Americans, but it seems the word is slow to spread.

The young woman survived the class, despite his ignoring her and the other woman in the class, solely addressing the male students, etc.

So I asked her to find out his name, said I’d write to the prof’s chair and the dean, but, as my partner pointed out, that’s not going to change much. Still, maybe we have to settle for just very tiny moves forward.

What do you think?

Also, the university is not mine; it’s the one up in the Texas panhandle.