As I pointed out yesterday before stirring things up a bit, I was up most of the night Sunday night working on a grant (two, actually), and I went full tilt all day yesterday to get it done. Consequently, last night I was in no shape to blog. I chilled. I copied. I picked a rerun. Interestingly, I remembered this post, which was something I did way back in early 2005. the last time I reran it was in 2006; so if you've been reading less than four years, it's new to you, and I'll be back for sure tumorrow. It's also interesting because this post is of a style and subject matter that I don't write about much anymore. Maybe I should.
I've been thinking about denial lately.
I just don't understand denial, at least not when it comes to cancer. I just can't understand how intelligent people can ignore or deny an obvious cancer until it reaches a point such that it is either incurable or has a small chance of cure, particularly when it could have easily been treated with a high probability of success if diagnosed at a much earlier stage. I could never understand it when the first time I encountered it as a resident, and I can't understand it now. Even in this day and age, we still see late diagnoses of obvious breast cancer. And it's not all that infrequently that we see them at our institution. However, because there are so many surgeons and oncologists seeing breast cancer patients, it's usually only once or twice a year that the power of denial smacks me in the face, and I have to deal with it. It smacked me in the face last week, and then it smacked one of our oncologists in the face this week.
What got me to thinking about denial were these two cases. The first is a patient whose case was presented at our weekly Breast Tumor Board yesterday. This is a 60-something year old, educated woman, now retired, whose daughter worked in a doctor's office and, as part of her job, even ordered mammograms for many patients. She was not the stereotypical poor minority with no insurance and on Medicaid that one might expect to present with a neglected cancer. She was fairly well-off, intelligent, and educated, and she had a good family support system. In fact, this woman presented to the oncologist only because her daughter had noted that she had bilateral breast masses. The only reason her daughter had noticed these masses is that they were so big that they were distorting her breasts in a manner that could be seen through the woman's clothes. When this patient was examined by our oncologist, she had bilateral breast masses that were 7-8 cm in diameter and a liver that was (as the oncologist put it) at least 10 cm below her costal margin (meaning it was hugely enlarged by tumor). Needle biopsies of the breast masses were done, as were CT scans and bone scans, all of which confirmed the diagnosis of huge bilateral breast cancers and metastatic disease to the liver.
Hearing about my colleague's case yesterday reminded me of last week, when I saw a similar case, although not quite as bad. Here was an African American woman around the age of 70 who came in with her daughter and her husband. She was intelligent, well-dressed, and well-educated, as was her daughter. When she came to the office, she looked almost as if she had come there from church. Of note, she had almost literally been dragged into the clinic to see me by her daughter as a result of a trip to the emergency room the week before. Apparently, her mother had fainted and been taken to the emergency room. While working her up there, the E.R. docs noticed that her entire right breast was hard as a rock and the nipple was retracted. In addition to the workup of her syncope, they ordered bilateral mammograms. Before I ever saw the patient, my nurse had put the mammograms up on the viewbox (I was in another room). When I came out, I could literally see the tumor from across the room. It took up the entire right breast. When I examined her, her breast was indeed as hard as a rock, and the nipple was almost completely inverted. There were small tumor implants in the skin surrounding her nipple. Fortunately, her skin did not show the telltale signs of inflammatory breast cancer (a particularly nasty variant), but her axilla (under her arm) showed palpable hard lymph nodes. The tumor was stuck to her pectoralis major muscle. This all made her at least a stage III. There was nothing to be done for her surgically, at least not now. All I could do is to do a core needle biopsy and order some staging tests to see if the tumor had spread and refer her to an oncologist after the tests were done. Even in the best case scenario where it hasn't spread beyond her breast and lymph nodes, she will require chemotherapy to shrink the cancer before she could undergo any sort of curative surgery, and her odds of longterm survival will be 50-50 at best (and that is a very optimistic estimate).
I thought of the first case like this I ever saw, when I was a junior resident 14 years ago. The story was eerily similar. This patient was in her early 60's, most definitely not poor, and with a close family. She presented not just with a large tumor, but with a large, nasty, fungating, bleeding tumor that was eroding through the skin of her breast. It was a real problem, not just because it was a locally advanced cancer, but because it was intermittently bleeding a lot. Even worse, it smelled. Part of the tumor had become necrotic (dead) and was rotting. Even more amazing, the woman was married. We found out, upon further investigation, that she had managed to hide this problem from her husband and family for at least two years. (What this says about her marriage I don't want to speculate about, but can't help doing so.) It was only when it began to smell bad that she could hide it no longer. Back then, neoadjuvant chemotherapy (chemotherapy before surgery to shrink a tumor and make it easier to remove) was not as accepted as it is today. We ended up operating, because there was nothing else we could do to control the foulness and bleeding of the tumor. As a junior resident, unexperienced in these matters, at one point I asked her a very stupid question: "What did you think was going on here?"
Her reply: She thought it was some sort of skin infection. I think she honestly believed this, or somehow had convinced herself that this was true. I also think that, at some level in her subconscious, she must have known or suspected what was really happening.
And they're not the only patients. A couple years ago, I saw a patient brought in by her family because someone noticed a lump on her side while hugging her. She had tumor growing through the skin and fungating. I've even had a man present with a breast cancer growing through the skin under his arm. He was slightly different, though, in that he knew something was badly wrong but kept delaying because his father was ill and he didn't have any insurance, even though he had a job as a security guard. I suspect his denial was faciliated by the mistaken belief that men don't get breast cancer.
Even though my experience with these patients is by no means extensive, I have made some observations. None of these patients, with the exception of my male patient, have been even remotely poor. All but one had insurance. They were all intelligent. Most were college-educated. All had families providing good social support systems, families that were shocked, dismayed, and confused when they found out how long their loved one had hidden this deadly disease from them. They also tend to express feelings of guilt that they didn't discover the cancer sooner, when either when cure was still possible or when curative treatment had a much higher chance of success. That is not to say that I don't see neglected cancers among poor women (although rarely as spectacularly neglected as the cases above), where one might expect it because of poverty, ignorance of the disease, and poor social supports, but there is also likely an element of denial as well. The cases I just described are different in that the level of denial goes beyond what is normally seen. It is also not to say that men do not deny as much as women or that people do not deny other cancers as much as breast cancers. My practice consists mostly of breast cancer; it is what I see.
Denial can be a serious problem in cancer. Circumstances and symptoms ultimately forced the patients I described above to accept that they had cancer. Nearly all of them pursued treatment vigorously after they finally accepted their diagnosis. Some patients continue to deny their diagnosis after a doctor tells them, particularly patients who are not symptomatic or only mildly symptomatic. "There must be a mistake," they keep telling themselves. This can lead to refusal to accept treatment or noncompliance with treatment. There is a great deal of debate over whether it is somehow adaptive and that extreme cases such as the ones I describe above are simply maladaptive. I suspect that a little denial is a useful psychological coping mechanism that gives us time to adjust to the bad news. However, it can also have devastating results if we can't get past this initial stage.
A lot of this denial, I'm sure, is accentuated by the fear that cancer produces and, of course, the fear of death. Also, there is a view of cancer treatment itself prevalent in society that naturally produces fear. Cancer often some combination of surgery, radiation therapy, and/or chemotherapy. Surgery is never pleasant. Radiation therapy is not particularly pleasant, either, but usually pretty well tolerated. Chemotherapy is not pleasant in many cases, sometimes horribly so. People lose their hair and vomit. (Indeed, in my experience, patients seem to fear chemotherapy far more than they fear surgery or radiation therapy.) It is fear of these proven, conventional treatments that sometimes leads people with treatable ("curable") cancers to seek unproven or ineffective alternative therapies rather than the less pleasant but more effective conventional therapies, a fear that alternative medicine practitioners do little to alleviate and all too often exaggerate or spread false information. That is not to say that alternative medicine practitioners are the main reason for this fear (no doubt the fear would exist at nearly the same level if alternative medicine didn't exist), but some of them do exploit it.
When we encounter patients like this (as all doctors who take care of cancer patients will, from time to time), all we can do as doctors is to tell it straight and try to do our best to alleviate the fear that led to the denial. We need to appear confident and reassuring, but not overbearing. We must be prepared for the possibility that the patient will continue to deny, even after you have done a biopsy and produced a tissue diagnosis. And what we must try never to do is to pass judgment or look at these patients as stupid or crazy. And we must try to suppress our natural desire to ask questions like "What did you think was going on?" Such questions may be worth asking later, after they have made it through their treatment and we want to learn more about the phenomenon of denial, but not in the acute setting, when the patient has finally reached the point where denial cannot protect her psyche from the reality of cancer.
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I educate mostly lower level students at a community college and see echoes of the type of denial you describe here. They often know at a certain level that their education level is pretty bad, but some cannot acknowledge it. The worst ones are often the wealthier ones, but they seem to have adopted this defensive mode as a way to keep themselves above the poor students.
I can hear that Oingo-Boingo song in my head: "Nothing bad ever happens to me...."
Interesting - I've had a similar experience in my work in radiology (as a sonographer). Older (75) lady with an orange-sized mass which was brought to her doctor's attention after her daughter noticed the lump through her clothes. The patient seemed, most of all, to be ashamed. Perhaps because by the time she got to me for pre-op imaging everyone had asked her *that* stupid question: "just what did you think was going on?" in which the unsaid might be: "didn't you THINK?" which is naturally received quite badly.
Or perhaps she was ashamed at the consequences of her own denial.
It IS fascinating, and I would be interested to know if there's an overlap with alt-med patients of serious illness - those that will go against the advice of numerous specialists for a herbal or vitamin or energy or somesuch treatment for cancer.
As an aside, happy Star Wars Day. May 4th be with you.
My mother-in-law, right now. She was supposed to go in this Thursday for screening for possible gastric cancer. She cancelled the appointment "because she's not feeling well enough to go in" (nevermind that she is feeling well enough to go into town shopping every day). But her method of dealing with fearful things has always been to deny that it is happening. My husband and I don't know what to do to get her to comply; if it *is* gastric cancer it's not the "best" kind to have (if there even is such a thing, but delaying diagnosis helps nothing. Seriously, though, what do we DO to get her to face this sooner rather than later?
I don't know if 'educated' really matters, if they are ignorant of health matters. Most people know almost nothing about medical matters or how their bodies work. They don't teach this stuff in school, but they really should.
As a survivor of breast cancer (one year and counting...) I make a point of talking openly about my cancer, and the treatment, emphasising that because it was caught early I have a very good prognosis, and that the treatment really ain't that bad. People are sometimes a little surprised that I talk about it so easily - it's still often seen as something to keep secret, as if it's something to be ashamed of. That's weird!
Seriously, though, what do we DO to get her to face this sooner rather than later?
Was she supposed to go to that Thursday appointment on her own ? It might be easier if a member of the family makes the appointment with her and arranges to go with her. And make it clear this is a non-negotiable thing you're doing because you're worried she might die, and if she doesn't feel well you'll just carry her there because maybe her not feeling well is something she should be seeing a doctor over in the first place.
@Caravelle -- no, she was going with family. But she has the power to cancel her appointment...
And, yes. But you have to be aware that this woman has sat out no fewer than TWO moderately serious strokes and refused either hospital or ambulance help. I've tried talking to her about the consequences of this behaviour, as has my husband, but she makes all the right kind of "oh my no, I really don't want to risk myself" noises and then doesn't change anything. She has a well of stubbornness out of which she powers her denial which I can't find the bottom of.
I and my husband are very aware of what this behaviour means for her long-term survival. It's enough to make you scream.
@Caravelle -- no, she was going with family. But she has the power to cancel her appointment...
I guess telling the doctor not to listen to her when she cancels an appointment is one of those unethical thingies you can't do...
And, yes. But you have to be aware that this woman has sat out no fewer than TWO moderately serious strokes and refused either hospital or ambulance help. I've tried talking to her about the consequences of this behaviour, as has my husband, but she makes all the right kind of "oh my no, I really don't want to risk myself" noises and then doesn't change anything. She has a well of stubbornness out of which she powers her denial which I can't find the bottom of.
I and my husband are very aware of what this behaviour means for her long-term survival. It's enough to make you scream.
Yeah, I was worried about that when I posted but thought "who knows", and as it turns out I am way out of my league here :p
I can only offer my sympathies on your situation then, I hope you manage to work something out.
I wonder if it IS more common with women, since we are "supposed" to be care-takers, rather than needing, or even demanding, that our families care for us. Women are frequently in the habit of putting their own needs behind those of other family members and that kind of illness is an incredible drain on family resources.
On the other hand, men are notoriously bad about going to the doctor's office for anything, so maybe I am totally off.
Robin : I wonder if it IS more common with women, since we are "supposed" to be care-takers, rather than needing, or even demanding, that our families care for us. Women are frequently in the habit of putting their own needs behind those of other family members and that kind of illness is an incredible drain on family resources.
On the other hand, men are notoriously bad about going to the doctor's office for anything, so maybe I am totally off.
Taking this in the spirit of your post, i.e. using broad-brush gender expectations to explain a disparity you're not even sure exists, i.e. BYO salt mine : Maybe not. Married people tend to live longer than bachelors which may be because married people have someone to tell them to go to the doctor when they need it. In this context and taking the gender stereotypes you mentioned, the difference wouldn't be so much because women as caretakers don't go to the doctor, but because men as caretakees are less likely to make their wife go to the doctor.
... and in support of that theory, notice how many of the women Orac mentions were brought in by their daughters.
I wonder how many of women's cases are due to discomfort with their bodies. Breasts have been highly sexualized and if one has been socialized that good girls don't think about that it's quite easy to avoid looking at or touching oneself.
I agree that most people are unaware of the advances in cancer treatment until a friend or family member is involved.
I am well educated and have excellent health care. I would rather die quickly than go through cancer treatments. I've seen the barbarity of this form of medical torture up close. Why do you think people who submit to cancer treatments are called "heroes"?
For those of us who know we are not "heroes", who do not wish to spend miserable years "heroically battling" cancer, it makes sense to learn about cancer as late in the game as possible, and to seek a quick end after the diagnosis.
You want to end the "denial", try offering less hideous treatments.
What? If you feel this way, wouldn't it be better to find out about cancer as early as possible, when the treatments are much less invasive and extensive?
Every woman I know who died a hideous death from breast cancer was religious about her mammograms. Didn't help. The myth of "finding cancer early" is just that.
So no, I don't wish to find DCIS and have my breasts amputated, when doctors have no idea whether or not it will ever cause any health problems. And no, I don't wish to "battle cancer" painfully and have it kill me anyway. Like poor Lynn Redgrave, who once made a commercial about how she was going to die laughing, but wouldn't die of breast cancer. Oh well.
greensleeves - I am wondering, of those people (you call "heroes") who underwent treatment and fought their cancer for miserable years, do you wish instead that they had just let themselves die right off, instead of fighting to prolong their lives?
I don't know about you folks, but I realized a long time ago that I do not live for me. It sounds barbaric, but whether I am alive or dead really doesn't bother me, personally. However, I also know that by dying, I will cause significant pain and suffering to at least a few people, people who I care about very much, such as my wife, children, and family. They will be deeply saddened if I die, and I never want them to be sad. Hence, I keep on living, and I do it for them. Similarly, I hope they do it for me. I don't want to live without my wife, without cancer or with. I want my dad around as long as I can have him. If either were to have cancer, I would hope they battle it as long as possible. For me, as I would do for them.
The oncologists, etc here can correct me if I'm wrong, but I don't think this is the typical dilemma. People with untreated cancer don't die quickly - they often linger for years in increasing pain and disability, until they eventually die. I'd personally rather take some potentially uncomfortable treatment than a slow, agonizing death.
You want to end the "denial", try offering less hideous treatments.
Is that you, Mike Adams?
The idea that we must suffer horribly in order to please other people sounds so sweet and romantic, but it really doesn't appeal to me much. Sorry.
And frankly, seeing how they died, I wish my dear friends and relatives had been able to end it quickly and with dignity.
natalie: have you ever watched someone die after the "uncomfortable" treatments? Same same.
someone: No, this is not Mike Adams.
My point is that denial is not the only reason people refuse to join the army in the "war" against cancer. Some of us are conscientious objectors.
the survival rates for certain types of cancer (breast among them) with early treatment are actually pretty good. New chemotherapy techniques are much better than they used to be. My mother was tired all the time and forgetful, but she lamented that she's the only cancer patient who didn't lose weight. The chemo she was on didn't make her nauseous. She lost some of her hair, but it came back. The worst lasting consequence (if we're lucky and it doesn't come back, been about 6 years so far) is that she had to have one of her lymph nodes removed and can't do any heavy lifting with her left arm.
Some types of cancer are a pretty terrible death sentence with only a tiny chance of survival. I do not envy people in that predicament, and I might err towards an early death if I was in that situation as well, but many cancers are survivable without undue suffering these days.
My mom was offered a lot of woo-ey bullshit by her new-agey friends and relatives and I'm so glad she did the right thing.
We have a wonderful family member, highly intelligent and educated, a former science researcher, who denied his symptoms and is now going through the agony of "How could I have been so dumb." He has a wife and two young children.
Really? Because it doesn't seem like you're talking about making them more "able", giving them any power over their fates; it sounds like you want to take that power away from them, taking their options away by keeping them in ignorance.
I think sometimes the changes to your body happen slowly over time. You get used to it and it becomes the new normal. Then the next change occurs and you get used to it. It isn't necessarily a conscious decision.
I had a lump on the side of my neck for quite a long time before I did something about it. I remember noticing it and not even really thinking about it. It wasn't until I went in for allergy testing and the doctor told me to see my regular doctor right away that took action. After the fact it is easy for me to realize that I could feel a lot of pressure and that I was even choking sometimes.
The lucky thing for me is that it was thyroid cancer. Most thyroid cancer spreads very slowly. We are also extremely successful in treating it. I definitely feel really stupid for what was essentially denial.
I will definitely say that the denial had nothing to do with worry about "uncomfortable" treatments. Yes, treatments can be uncomfortable but when people are dieing the discomfort is because they are dieing of cancer. It isn't because of the treatments they have received. Dieing of cancer is horrible.
I am proud that both of my uncles who eventually died of cancer (bladder and bowel) accepted their treatments and did their best to fight. Unfortunatel, they both denied that they had a problem for too long.
@greensleeves -- I've had a few people in my family die of cancer, and a few more survive it.
My maternal grandfather died after no treatment, the way you seem to think is "quick" and desireable. Not just no, but HELL no. He died a lingering, agonized death, just about the ugliest thing I've seen happen to anyone. Orac has brought in stories of other, similar deaths. Dying of cancer is a nightmare, not "quick", and certainly not better than treatment, irrational fears to the contrary. It stank, literally...I don't think you have any idea how the rot of cancer actually smells.
My other grandfather, in contrast, was diagnosed with stage III testicular cancer. He was of an age that chemo/radio was only barely an option and past the point that surgery would have helped. Fortunately, there are a number of treatment options these days, and with a series of (admittedly painful) injections of antiangiogenesis drugs, which stopped the growth of the tumours, he survived another 6 1/2 years. The end, when it came, was fairly quick, although painful; in the meantime, however, he went on holiday, took walks around the bay, visited his sisters and more distant family, spent plenty of time grousing about politicians, etc.
My maternal grandmother had skin cancer. She got surgery and a brief bout of chemo, but because it was caught early, that was the extent of it. She had 25 or so extremely cantankerous years after that, and eventually died of a stroke.
My father had a brain tumour. He had what was revolutionary surgery at the time (I gather it's fairly routine for that kind of tumour now), and a brief bout of radiotherapy, and that was that. There was no recurrance, and three months of misery and worry was all there was of it. He survived another 20+ years, had a very full life, and died suddenly of completely unrelated causes.
You very obviously get your information from places like "Natural News" if not "Natural News" itself, and you have no idea (don't want to have an idea?) how inaccurate a picture it is. Nobody is claiming that treatment of cancer is a walk in the park -- it's highly unpleasant, even debilitating at the time depending on what needs to be done -- but also depending on the cancer, long-term remissions or even cures are possible in which there is a full quality of life. Unless you have some kind of death-wish and want to check off the planet as quickly as possible, claiming that denying yourself those years is better is just....bizarre.
I hope I never get cancer. If I do, I'm in there for treatment as fast as possible.
greensleeves, my relatives have thankfully been mostly cancer free. The sole exception is my chain-smoking great-grandfather, but he died in the 1940s (well before I was born). I'm not sure what treatments were available at the time, but I'd wager they've advanced some in the last 70 years.
A friend of mine who is in his early 30s was recently diagnosed with testicular cancer (after already losing one testicle to a benign tumor). Surgery has allowed him to keep enough of his remaining testicle that he could have another child if he wanted, and chemo has allowed him to keep living. He hasn't experienced any significant side effects from the chemo and isn't expected to die anytime soon. The last time I saw him he seemed healthy and is quite happy to be alive. Of course, he has a 7 year old son he actually cares about, so maybe that has something to do with it.
Good lord, I completely forgot about my grandmother's skin cancer. It was pretty easy to forget, too, since the treatment was incredibly quick and virtually painless. My grandmother lived another 10 or so years until she passed away in her sleep at age 89.
So, I had a period of fairly extreme denial, luckily not having to do with health, but instead having to do with a piece of real estate on which I lost tens of thousands of dollars due to long-term inaction (money I could really use for my family right now), so perhaps I can shed a little bit of light on the thought process here...
In a nutshell, the 95% of the time I could get myself to avoid thinking about the problem, I was far happier than the 5% of the time I was aware of it. And that 5% was usually in the form of the occasional sleepless night -- and 2AM on a weeknight is not really a time you can work on rehabilitating a house or try to sell it... or see an oncologist for that matter! So I'd toss and turn until I could make myself go to sleep, then the next morning, if I could manage not to think about it, well, I might very well go two or three or more weeks before it even occurred to me again, and I would be much happier during that time. Even though the problem was slowly getting worse in the background, any time I wasn't thinking about it, my life seemed far more stable and pleasant and safe.
I'm sure it must be a little harder to practice that level of denial when the problem is right there on your body... but presumably these patients found some way of dealing with it that didn't significantly interrupt their everyday lives (never underestimate the power of humans to adapt to just about any situation and to accept it as "normal"), and from there, denial and avoidance are practically a simple Pavlovian response: If you think about the nature of the problem, you have cancer; if you don't think about it, then you are (apparently) healthy and happy. Soon you become conditioned not to contemplate on it.
It's surprisingly easy to fall into this kind of situation, even for someone who is generally rational. In a way, I suspect that a penchant for pragmatism might paradoxically make someone more susceptible: I find that I am quite good at finding a way to live with just about any situation that is imposed on me -- which is definitely a good thing when I don't have control over the situation, but can backfire when I do have control. Reading the stories Orac tells about these people, it sounds to me like in most situations they were strong "make-due" types of people -- if they didn't have a certain strength, it would have been impossible for them to maintain the denial for so long!, if you know what I mean.
Anyway, just some thoughts...
Re: The gender thing... my gut feeling is that it's probably gender neutral. Another anecdote: My dad almost died from a simple UTI that he left untreated until he went into septic shock... He just didn't like going to the doctor. It must have hurt like a sonofabitch when he peed, but...
Has anyone done a study to see if there were preexisting depression issues (unipolar or bipolar)? Many people who seem to be fully functioning but suffer from moderate to severe depression tend to ignore any push for treatment. Ironically, these people would be the first to bully a friend or loved one into treatment at the first sign of trouble.
A good friend of mine was diagnosed with DCIS, pretty aggressive, too. She had a lumpectomy, chemo, and radiation. That was a good many years ago and she's been fine ever since.
Nor were the treatments "torture." She said the chemo would leave her feeling kind of wiped out for a couple of days. The radiation was no worse than a medium sunburn, and aloe kept it from being more than a minor nuisance.
I can't decide whether greensleeves is a troll or just an idiot, but whichever may be the case, I sure hope nobody takes him or her for any kind of authority. You want to die quickly, greensleeves? That's your privilege -- but kindly avoid taking anyone with you who didn't need to go.
And the beat goes on............I work in hospice (previously an oncology nurse) and there is much denial at the end of life. It hurts me only because we could with so much support and improvement of quality of life. Average stay in hospice is 4-10 days, and it is not rare for the patient to be dead as we walk into the room to do the admission paperwork.
Denial.........what a defense mechanism.
This is a psychological phenomenon that should be scientifically studied rather than passed off as inexplicable behavior. E.V., #30 might be right, or there may be some other neurological/mental problem underlying such denial. I know of a case where a young woman had cancer (forget which kind) diagnosed early in a pregnancy (already had two small children) and was strongly advised to abort and get immediate treatment, but she "believed" that it wasn't "that bad", went ahead with the pregnancy and died a few months later. This seems to be the opposite of the denial problem. I personally have known at least four people (now deceased), who had conventional treatment but "believed" "positive thinking" would save them (even when told nothing more could be done). Perhaps these two problems are different aspects of the same psychological process. At any rate, has anyone searched the literature for studies on the denial problem?
Troll or no, greensleeves is pretty out-of-date about cancer surgery protocols. DCIS isn't treated with mastectomy unless the patient asks for it. By its very nature, DCIS doesn't invade the lymph nodes, meaning that a tumorectomy (sometimes called a lumpectomy) with 16 radiation treatments is a much better option. Cosmetically, this avoids the need for resection and reconstruction, and most don't even require chemo. But still, mammograms aren't appropriate for all women, particularly those under 40.
I read a case (I'm a non-clinical researcher) of a man who was diagnosed with advanced NSCLC and was terrified to face the diagnosis. We have government-funded health care, so the insurance wasn't the issue either - he was afraid his wife would leave him. Their marriage had been rocky and he was afraid that that would be the camel that broke the straw's back.
Cancer has a stigma around it that other diseases don't, especially among immigrant groups. There are a lot of East- and South-Asian immigrants in my area, and there is a real label attached to a cancer diagnosis that wouldn't otherwise be attached to, let's say, a heart disease diagnosis. People get shunned by their families. It's pretty serious. Denial is not so mysterious in such a misunderstood group of diseases.
Hmm, that last comment should say "among some immigrant groups", not immigrant groups in general. I have no idea if there is a stigma among Sri-Lankan or Nigerian or Ukranian immigrants, for example. In light of the race smack-down we all enjoyed yesterday, I feel like I need to watch my language :P
With older women, perhaps some of this comes from treatment they received from doctors when they were younger. My grandmother began feeling ill about the time her children were in high school. Her doctor told her it was simply empty nest syndrome and refused to see her. Fortunately, she worked in a hospital kitchen because when she collapsed in the bathroom at work from a bleeding ulcer severe enough that she would have bled to death, help was not far away. Other older generations of women in my family have also told me about doctors dismissing their concerns as nothing important because they were only women. If things you find serious have been dismissed before you might be inclined to think something new was also trivial.
My grandmother had pancreatic cancer. She didn't want to know. She didn't want to have anything to do with knowing.
My grandfather had been taking her to doctors for 6 months (repeatedly, because they weren't helping) before he went in with her to one appointment and lost it at the doctor, "You don't understand! This is a serious problem! My wife is in pain, she can't sleep, she cries all night, something is wrong!"--and found out then that my grandmother had been lying to the doctors the whole time. She was telling them nothing was wrong, that my grandfather was making a big deal out of nothing, and that was why he kept bringing her in. No wonder they weren't helping!
I suspect they had Medicare, but they weren't wealthy, nor well educated, just so you have a point of contrast to the instances in the article. But being able to afford treatment was not the issue. She just didn't want to know.
By the time they finally got a diagnosis, it was much too late. Over the next several months, my grandmother died a slow, agonizing, horrible, excruciating death. For the last week of her life, she was in so much pain that she couldn't speak (and nothing could relieve the pain).
It was terrifying, it was miserable; I can not imagine anything I want to experience less than what she went through. (Should it come up) No matter what I have to do, I will do anything not to have to go through that myself.
I'm with greensleeves. If neoplastic disease ever occurs in me, all I want is morphine. And when it gets too bad, a little 'too much' morphine. Or else a .22 long rifle hollow point to the brain stem. This goes for anything much worse than a broken leg. I've passed on my genes and don't care too much about this aging phenotype. Let it go back to the dirt. I'm not saying that others ought to necessarily feel the same way that I do but if everyone did, there'd be no health care crisis in the US.
@Marie T
I think that reason for not seeking care (having been belittled or treated poorly by doctors in the past) may unfortunately be more common among older women.
My grandmother would rather have died at home of peritonitis than been treated by a doctor, but somehow my mom dragged her to the ER. For her, it was very specifically because she had been marginalized, ignored, and abused (given a hysterectomy without consent) by doctors after the death of her child that was born with a severe birth defect in the 1960s. Now in her 90s, she would still rather suffer with pain that most people would find unbearable than see a doctor.
I completely realize that our anecdotes aren't proof that this is a true effect. It looks like there is some research on why women delay seeking medical treatment, but since most of it is subscription-only I'm curious to see if the feeling of having been mistreated by a physician in the past does contribute.
"I would rather die quickly than go through cancer treatments."
I would rather lose my hair, feel like crap and suffer what amounts to a severe sunburn (or have a big scar), than slowly starve to death in unrelenting pain, losing all control of my bowels and bladder in the process. I do not think the latter sounds very dignified.
I can only assume you plan to shoot your brains out after the doctor diagnoses you. Make sure your aim is on, or you might end up living an undignified, surgically-saved life.
I will stop feeding the trolls now.
@darwinsdog
"I'm not saying that others ought to necessarily feel the same way that I do but if everyone did, there'd be no health care crisis in the US."
But there might be a cemetery-plot crisis.
My grandfather also hated doctors. He thought they were just out to get his money. (He may well have had experiences which legitimately gave him that point-of-view.)
All this talk of painful end-of-life decisions reminds me: if you have children, get a living will and express your desires clearly. Unless we die very suddenly, we'll all get to that phase eventually, and you will make it a lot easier on your kids.
I work for a UK charity that grants wishes to seriously and terminally ill children. You have branches n the US, Australia and New Zealand (and I think we had one started in Japan recently)
I only work as a book-keeper, but my degree was Biomedical Sciences, so I take an interest in the treatments little kids go through. And there's one universal thing (speaking broadly) the lack of fear. These children are willing to undergo treatments and suffer pain (maybe) to please their parents, and to get better. There is no big dark death thing lurking (which, let's face it is religious iconography) so they just go to the hospital and have the treatment.
Childhood leukemia has always been a problem, but the treatments are so impressive now, the same with adult cancers, as I'm sure Orac and some of you clinically qualified folks can attest.
Fear of cancer is sometimes worse than the cancer itself. If you don't have the archetypes of fear and pain, you're going to be able to react much better to the disease; any disease.
I haven't done a meta-analysis on the percentage of children surviving childhood cancers, but a gut feeling (no numbers yet) seems to indicate that survival rates have increased from 10% (I was told) to maybe 60% (again,anecdotal) I'll get the CEO to do the numbers and get back to you. I hate anecdotal evidence, I'll get hard numbers soon. Promise.
B
There seems to be a lot of misinformation out there about how bad chemotherapy in particular really is. Everyone I know who has actually had chemo in the past ten years or so has had a mildly unpleasant experience (fatigue, some hair loss, some vomiting), but not anywhere near as bad as the stereotype seems to be (the emaciated scarecrow with no hair whatsoever). I recently had the unpleasant experience of being in the room when three or four of my family members said that they'd rather have untreated cancer than chemotherapy, and I had absolutely no idea how to handle it. Granted, none of them have ever seen any pictures of a cancer that has grown through the skin, either; I'm sure of it.
Idiots like "greensleeves" don't help any, either. I'm with Luna -- if and when I ever find out I have cancer, I'm in there for treatment as fast as my little gimpy legs will carry me. I've already had five surgeries, casts on both legs up to my crotch, a dislocated kneecap, a broken collarbone, and gallstones; how bad can chemo possibly be compared to all that?
@Brent
The percentage of childhood cancer survivors is going to vary widely by country. Here are some recent stats for Canada. It is about 80% in the late 2000s. Canada and the U.S. usually have similar medical success rates because they are both large economies that can afford contemporary medical treatments (and don't get it twisted - kids who have cancer don't wait for treatment). Obviously, the poorest kids with cancer in Canada are better off than the poorest kids with cancer in America since nobody cares if they're insured or not.
I don't know what it'd be like for UK, Japan, Aus and NZ, but I'd imagine it would be similar. I'm sure the NCI and NHS keep similar statistics as Stats Canada.
It occurs to me that I am accessing that article from work (naughty, I know) and some may not have access to CMAJ. The citation is:
Canadian cancer statistics at a glance: cancer in children
Larry F. Ellison, MSc, Prithwish De, MHSc PhD, Leslie S. Mery, MSc, Paul E. Grundy, MD for the Canadian Cancer Society's Steering Committee for Canadian Cancer Statistics
in CMAJ ⢠February 17, 2009; 180 (4)
PMID: 19221356
Terrific post, especially post-grant submission!
Women presenting with late-stage breast cancer is an old problem, one that historically related to feelings of shame or embarrassment, and/or denial. Lately, I suspect, some are more afraid than ever because they fear over-treatment and they don't know/trust their physicians.
One unfortunate fallout of the mammography debacle is that many women now think there's no value in early diagnosis of breast cancer.
Good luck with your grant proposal.
It seems very rude and unfair to call "greensleeves" a troll or and idiot. S/he's just stating his view. Personally, I think it depends on the type of cancer and the prognosis for survival time, quality of life, age and state of health other than the cancer. If, at 60, I was told I had something treatable and had at least a 50% chance of survival, I would do it, but if it was something like pancreatic that gave me only say, three months, I think I'd just check into hospice or go up to the summit of some mountain pass, take a sleeping pill and lie down in the cold with no coat or other protection.
Everyones' limits are different and should be respected. I respect greensleeves view more than a family I know of who demanded additional chemo (they had to look far and wide for a doctor to accommodate them) for a sibling who had stage IV melanoma that had already spread to the brain, lungs, and elsewhere. Talk about denial! They wouldn't let him go into hospice because it would be "giving up hope".
The worst thing I can possibly imagine is extreme old age, with progressive loss of faculty and dementia. If I am spared such an outcome by developing a terminal cancer somewhat sooner, I shall be grateful. I'd rather not have it happen just yet, because I'd like to see my son grow up and become independent first, but I can absolutely imagine a time when I will welcome that with open arms. Even if the process itself is painful (let's face it, dying usually is) I'd still view it as preferable to gradually dying of old age.
The problem is that once someone else has noticed a cancer, it is impossible to find a way of saying "Yeah, I kind of knew, but I didn't care".
That's the personal bit. Now the professional bit.
I work closely with physicians much of the time, but I am trained as a scientist and am not a physician myself. It never ceases to surprise me that many things that seem obvious to me seem strange to physicians. And my view, not theirs, is repeatedly validated by the conversations I have with patient representatives (not cancer patients, that's not my field). I am not sure what we are doing wrong in medical training but there is a whole set of assumptions that it seems to bring that don't fit in any way with how patients see things.
That's how it works in internet fora: the forum regulars gang up on the person with a dissenting opinion, call them names and discourage their participation. That way, group consensus is maintained, and everyone with the "correct" opinion gets to pride him- or herself for in-group inclusion. Typical primate dominance posturing.
As opposed to real-life fora where every is oh-so-accommodating and plays nice, and nobody ever calls names?
Also, Anthro is as much of a regular as anyone else posting on this forum, and he/she defended greensleeves. And lots more stood silently and didn't weigh in with an opinion one way or another.
But hey, don't let facts get in the way of your sweeping generalizations.
Not cancer, but...
I think I was led into a state of denial that lasted for some months by a doctor, a specialist. I had an odd presentation. Young, severe, and with unusual signs and symptoms. The specialist held onto an idea of the kinds of symptoms and severity of disease I should have, dismissing what didn't fit his picture. For some months, I became convinced that my diagnosis wasn't what was wrong with me largely because my doctor kept telling me that disease wasn't causing my symptoms. I got out of it because I moved and got a different set of docs entirely, including a very good specialist.
I would hope that sort of thing doesn't happen with cancer but I'm not willing to bet on it. It shouldn't have happened with me, either. Patients in denial is bad; doctors in denial is worse, I think. That can deepen a patient's denial or even place a patient there. Patients in denial doesn't surprise me. Doctors in denial about the condition of a patient (especially when there is what one would think would be undeniable evidence such as labs and imaging beyond signs), I still find it shocking.
No old people. Sounds like Logan's Run.
Good point from E.V. (30). Some people aren't in denial, but are just 'tired' or depressed. Knowing you have something that will kill you, to them, means no worrying about job situations, old age problems, loss of independence, pension and money issues in retirement, and a whole load of other potential and present problems that can seem insurmountable. There may even be a sense of relief knowing that death is just a short time away and will solve these problems.
Maybe in retrospect when they're actually dying of the cancer they may regret their choice (painful, invalid-status, dependent on others for the simplest task, loss of privacy and dignity), but without knowing what cancer may entail, they may view it as a way of escape.
Why does the tumor have to be shrunk by chemo before you can operate? That seems counterintuitive to this layman, though I have no doubt there is a good reason.
@darwinsdog #38
I realise you are probably only trolling or taking the piss, but for those of us who have actually lost loved ones BECAUSE they had that very attitude, fuck you and bite me, asshole. The damage it did to our family was incalculable.
And if you don't like my reaction, fuck you again.
@Anthro #48 -- it isn't rude or unfair to call someone on expressing an opinion which is based on false or outdated information. Especially in an area where people make life or death decisions.
Consider the fact that hearing such things as a cultural meme appears to be one of the things which, in some subcultures at least, leads people to delay or deny treatment/diagnosis. Sure, everyone has the right to their own opinion, but everyone also has an absolute right to have true information on which to base their opinion, and everyone also has the responsibility over whether they echo true or false information to other people.
When people are unwilling to change what they say in light of contradictory information, they are responsible for passing on false information, which influences others, and they get to be called on that.
Without trying to defend greensleve's position I can somehow understand it. Not every patient is lucky enough to be cured and those who aren't seem to have suffered in vain. The thing is you won't know if treatment helps you unless you try.
My (chain-smoking) grandfather was diagnosed with lung cancer when he was 69 (by chance, hadn't had any symptoms then) and his doctor told him that without treatment he'd probably die within the next half year whereas treatment might give him another three years or so. Just like Pablo describes it, he chose treatment for the family (also specifically for me and my sister I think, because our father/his son had died quite early). He had three "rounds" of chemo and radiation therapy, each time telling us that he was feeling fine, and we were happy that he didn't stop therapy even though he obviously it could only stop the cancer from spreading and didn't reduce it or make it go away. Because of this treatment he had almost three and a half "additional" years, so he got more than he was promised, but those aren't very present in my memories. What I remember as if it were yesterday however are the last two months of his life (he died five years ago) and they were horrible. At first he didn't want to stop fighting because he wanted to be there for us (that made me feel worse than I had ever felt until then, including the time when my dad died) and when he finally accepted that all his doctor could do for him now was giving him enough analgetics to make his pain bearable he quickly became bed-ridden and had to be fed and medicated through a nasal tube. He didn't want that and removed the tube many times only to get another one. The thing that really got me down was when he begged us to stop giving him hydration or overdose his morphine so he would die and we couldn't do that out of fear of being prosecuted, knowing that he had suffered such a long time already and that he had gone through all that for us.
If I was diagnosed with cancer now, I'd chose treatment (being under 30), but I doubt my grandmother - who is also smoking heavily - would (she'll be 75 next week) or even go and see her doctor. I guess she'd be one of those who just ignore any symptoms they might have.
@LW: Orac may weigh in on this, but, in brief (and, mind, I am a midwife, not a doctor), if a tumor is large, the oncologists may try to shrink it with chemotherapy to make surgical removal easier - less blood loss, smaller incision for the patient, less time under anesthesia.
My husband and I have verbally discussed living will issues, but haven't formalized them (need to see our lawyer...). If I can be treated early on for cancer, then treat me. My step-grandmother lived for 30 years after her total mastectomy, and had a full and healthy old age. Her daughter had breast cancer and underwent successful treatment. She will hopefully live as long as her mother did and see her great-grandchildren too.
Still waiting for either DD or GS to address those commenters who mentioned that what GS described for breast cancer treatment is no longer the protocol and hasn't been for years.
But DD apparently thinks that providing facts in context that prove him wrong means that those who provide said facts are just a bunch of meanies who won't accept his shiny perfection in all things, sniff sniff sob, so he's going to make a grand Scarlett-O-Hara-style exit.
#55:
No I'm not. I'm stating my honest opinion.
...but for those of us who have actually lost loved ones BECAUSE they had that very attitude, fuck you and bite me, asshole.
Who are you to lay your own expectations on your "loved ones"? If you really loved them perhaps you would have respected their wishes in regards to end of life decisions. As rude as you are, perhaps those so-called "loved ones" of yours wanted to check out just to be rid of you, Luna.
#59:
I can't speak for GS, but for myself, I don't care what the protocols are. Perhaps they're relatively benign compared to the past. That isn't the point. The point is that I don't want anything to do with the medical profession as it operates in the US. I don't want the office waits, the patronizing attitude of health care providers, the grim environment of hospital or clinic, the expense, the inconvenience, the pathos of it all... I'd rather just die, which I'm going to do sooner or later anyway, despite any and all medical intervention. I have passed on my genes to kids & grandkids, resent the minor aches, pains & incapacitations of aging, and don't really give a damn about much anymore. It's my life, not anyone else's, and if I don't choose to pay exorbitant amounts of money to extend it, that's no one's business but my own. Understand?
Given the context in which you are making this argument, DD, you are making it sound quite reminiscent indeed of a fallacious political argument which goes something like the following: "I should treat others as I myself would want to be treated. I have no intention of personally exercising my right of X, and would not care if that freedom was taken away from me; therefore, it is perfectly permissible for me to campaign for that right to be taken away from everybody."
Everyone has a right to informed consent. Perhaps you've chosen not to inform yourself. That does not give you the moral right to spread misinformation.
Antaeus, I don't care what others do. If they want treated, fine. I'm not stating or implying that others should decline treatment just because I would do so. I'm just saying that I don't want treated. Got it?
I'm well informed regarding neoplastic disease, altho I don't follow innovations in treatment. I don't care to because I don't intend on being treated. I haven't spread any misinformation. I've merely stated that I don't want treated regardless of how severe or benign treatment may be.
Darwinsdog--
You do realize that most pain relief would count as treatment in this context, right? An over-the-counter analgesic might not, but narcotic pain relief would.
Sorry, Darwinsdog, but when you aired your condescending theory that greensleeves was being criticized because of "typical primate dominance posturing," you expressed an implicit belief that the emotionally loaded claims she was making about the horrific nature of modern cancer treatment were correct -- because, of course, if you acknowledged that they were not correct then you'd have to acknowledge that greensleeves was probably being characterized as a troll and/or idiot because she was promoting emotionally loaded falsehoods. It manages to be unbelievable, hypocritical, and crass all at the same time for you to now protest that you weren't spreading misinformation -- you were merely running interference for someone who was, and that your justification for doing so is that you don't happen to need that information.
I am posting a little late to the thread, but now this subject has become more personal to me.
My father called me on Friday to tell me my mother went in to the doctor two weeks ago because she was intermittently losing feeling in her left arm. The doctor found swollen lymph nodes in both her armpits and tells her to immediately go to get a mammogram and CT scan. My father asks me to Google her symptoms and tell him what it could be (because, of course, Google makes everyone a doctor).
She has now missed two appointments; she tells me that she had to work but I know that she only works to get out of the house, not for financial reasons. Her Grandmother died of breast cancer in her sixties, yet my mother and father have firmly planted themselves in denial.
This is so frustrating. All I can do is encourage her to get the tests done. They live 3000 miles away, so I will keep bugging them until she goes in. But I think this could very well become like the above stories, unfortunately.
@Kristen
Unfortunately, I can relate to your plight all too well. My own mother has been ignoring severe pain in her kidneys for years, despite the fact that her own mother died of kidney cancer.
In her case, denial is compounded by a distrust of Western medicine and an obsession with alt-med quackery. She self-diagnoses by using a pendulum to ask the universe. She spends money she doesn't have to get her chakras cleared by a local "healer". She recently bragged to me about not having been to a doctor in over a decade. When I suggested she could go in for a physical, she totally flipped out.
Her reactionary tendencies have kept me from even attempting to reason with her, especially since I'm the one who introduced her to all this stuff in the first place (I was young, but that only alleviates my guilt to a certain degree). I worry that challenging her beliefs could have a devastating effect on her deteriorating mental health. I have to keep whole aspects of my personality secret (such as skepticism and atheism) to avoid alienating her, thus depriving my son of a relationship with his grandmother.
It is incredibly frustrating to watch a loved one suffer due to denial and/or delusion. By respecting my mother's beliefs, we have enabled her to squander her nest egg and her health.
About a woman you saw with advanced cancer...
"She was not the stereotypical poor minority with no insurance and on Medicaid that one might expect to present with a neglected cancer..." Then you go on to say she is intelligent and educated...
You are surprised how educated, intelligent, successful people would be caught up in this problem of denial. That you typically see the poor in such situations. Are the poor not intelligent?
Statistically, perhaps there is a higher incidence of denial among the poor who have drug and alcohol problems. That might simply lead them to ignore symptoms and act in unintelligent ways. But I can think of no other compelling reason to single out those who are less fortunate as less intelligent or caring of their own bodies.
My entire family battles a rare disease. We all care about our health. We use the resources available to gain the best medical care we can.
Some of us are on disability. Some of us lead moderately successful lives and others of us are the most successful and well educated of our group. How much we are able to address health problems is determined by our health coverage. And that is determined by how we have been challenged to succeed in the face of difficult odds.
There are very intelligent, capable, engaging people who must deal with adversity that leaves them on disability of various sorts. It doesn't mean they can't reason as well as others. Or that they care any less for their own well being.