Wednesday, January 19, 2005

The deadly power of denial: Personal observations

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.

19 example(s) of insolence returned:


At 1/19/2005 9:58 AM, Blogger Saint Nate said...

I tend to think a lot of this denial comes from people knowing about cancer but thinking, "it could never happen to me." And when something goes wrong that could be a case of cancer, many desperately want to believe it's something else (such as your patient with necrotic cancer) they refuse to admit the possibility to themselves, even when it seems abundantly obvious. Another possibility, such as for your male patient with possible mistaken beliefs, are those who know something is wrong but find excuses to put off seeing the physician, afraid of what they might hear.

It just goes to show that no matter how educated or intelligent someone is, they're never beyond the capacity for self-delusion.

 

At 1/20/2005 3:57 AM, Blogger Sophie said...

You might be aware of this story, told from the patient's point of view : http://www.guardian.co.uk/g2/story/0,,1298603,00.html

My first reaction was : 'Ignorance of maths concepts can be very dangerous', but reading your post made me understand that behind the 'I did everything not to get brest cancer, so I won't get it', there might be denial at work rather than ignorance.

 

At 1/20/2005 8:06 AM, Blogger Orac said...

Thanks for the heads up. I agree that there was definitely significant denial in this woman's story. I haven't seen denial in younger patients so much, but I can see how younger women could rationalize that it "couldn't happen" to them.

 

At 1/20/2005 3:11 PM, Blogger Paul said...

I'm sure this has only a minor relevance to the cases you highlight, but I think one source of low-level denial is an unwillingness to go through the hassle of seeing the doctor. I don't mean the trip in the cold weather, but the experience of being with a doctor. Typically (for me) this consists of spending 11 seconds describing a problem that as I say it out loud sounds pretty lame, have them nod and uh-huh like they're listening, before telling me to take some ibuprofen and come back if it's like this in a week.

Now I know that's not really representative (even of my experience), but it's close enough that it's the expectation I carry with me. So something had better have been wrong for a while (so I know it won't clear up between making and attending the appointment), or at least be hanging off or bursting out, so that we've really got something to talk about.

Disclaimer: I'm British, which makes me more inclined to this sort of thing!

 

At 1/22/2005 11:46 AM, Blogger Epador said...

Probably one should differentiate between procrastination (they know there's a problem at one level or another but don't want to deal with it expeditiously), and true denial ("It's only a flesh wound!" - The Black Knight).

I think that your observations lead to the conclusion that you have to be intelligent to exhibit denial to a significant life-threatening disorder. Without a strong ability to intellectualize, the ability to maintain denial about an illness may be difficult.

The patients I have seen with true denial, for the most part, also exhibited an interesting paradox: they seemed quite cooperative, uncomplaining and eager to participate in treatment once the diagnosis is accepted. The procrastinators, on the other hand, tended to be uncooperative or inconsistent with treatment and follow up, and commonly had unkind things to say about folks trying to help them.

I can't help but make parallels to people's approach to politics and crises in social, political and economic arenas.

 

At 1/23/2005 12:21 PM, Blogger Orac said...

Epador makes a good point. There may be other factors at play. In fact, I will be making a followup post on this issue later this week, because I've come across another similar case in which denial was probably NOT the main reason for the patient's delaying of treatment.

 

At 1/25/2005 10:26 PM, Blogger Judy said...

My mother was a classic case of the sort of denial of breast cancer that you describe. She was a literate, well-informed, middle-class woman who took meticulous care of herself and visited her family physician regularly. It never occurred to any of us (including her doctor) that for years she had avoided breast exams or mammograms. When she was hospitalized for another matter, a nurse noticed a large, obvious mass on her breast and called the doctor's attention to it. God only know how long she had had it, and had hidden it from herself. The diagnosis actually seemed to come as a relief to her. A surgeon gave her a very matter-of-fact prognosis: "You have had this for a long time, and something else is going to get you long before this does. I would not do anything to it." Considering that she was 89 and in poor health overall, this was no doubt good advice. She died peacefully nine months later. At the time I could not understand how she could have denied such an obvious condition. Then one month after her death, I had a mammogram myself, after not having bothered with one for some years, and was diagnosed with a two-centimeter cancer that, to my surprise, I could easily feel once I was told it was there. And I have a PhD! As we used to say in Brooklyn, go figure.

 

At 1/28/2005 2:45 AM, Anonymous Anonymous said...

(Apologies for my lack of medical terminology; I'm not connected with the field in any way.) My mother suffered several years of increasingly debilitating sciatic leg pain in the '60s and '70s. Doctors were unable to make a diagnosis. In '77 scanning technology had advanced sufficiently to diagnose a benign but now enormous tumor on her spine. It was removed surgically, but her recovery was very long and incredibly painful.

When she began to experience leg pain again a decade or so later, she refused to mention it to her doctor. She believed the tumor had grown back, and she was _not_ going through the misery of surgery and extended recovery again. This time, though, the problem was clogged arteries. When she was finally diagnosed, the best her doctors could do was patch her together with the pharmaceutical equivalent of duct tape until her death a couple of years later. I'm not sure if this is true denial, but it was extraordinarily difficult to watch my mother become increasingly disabled by a condition she refused to have diagnosed.

 

At 1/28/2005 2:47 AM, Anonymous Anonymous said...

Forgot to sign the last post; my name is Karen.

 

At 1/28/2005 1:49 PM, Anonymous Anonymous said...

Paul's comments are closer to the truth than we might suspect. Most of the patients cited are female and over 60, an age that can still remember when many female complaints were considered "hysterical". Others feel that "if you're still up and walking around" there can't be much seriously wrong with you.
Come to think of it, how many women had MI's last year that actually went to the ER and were sent home because their chest pains weren't classic MI symptoms? (In a male, that is.) Hmmmm...makes you wonder where all that denial comes from, doesn't it?

 

At 3/09/2005 5:34 AM, Blogger Beth said...

Very interesting points here.
I wonder about one thing though; for those who survive cancer, even if there was no denial before, does denial become a problem for them later on? What I'm getting at is the cancer survivor's tendency to think everything else is a minor complaint; do you find that serious illnesses often go untreated in survivors due to their thinking "it's just a flesh wound"? I ask this because I'm a cancer survivor myself (not breast cancer) and I know I hesitate to raise complaints with my doctor because I actually feel silly complaining about anything--that problems must be my imagination, or that they're not serious enough to not just go away by themselves. I KNOW it sounds stupid, and intellectually I know better, but yet there it is just the same.
I think there are probably a million reasons why people like you described--as well as those with less advanced cases--refuse to see a doctor, all of those mentioned above plus reasons we may never know. But like epador said previously, it takes quite an imagination to be able to ignore serious problems--a less educated or less "intelligent" person might be (intelligently!) moved to action sooner because of not being as inclined or able to rationalize and excuse their problems.

Found you through the New Blog Showcase--what a treat!

 

At 3/23/2005 10:00 AM, Blogger melinama said...

My aunt, a vigorous and intelligent woman, point blank refused to go to the doctor when EVERYBODY AROUND HER knew there was something very wrong. Short of knocking her over the head and dragging her there, nothing could be done. By the time she was too weak to resist, it was too late to do anything for her lung cancer. I am sure this was her intention. She had always been a very healthy person. Being sick was not in her self image and she chose to die rather than deal with the medical establishment. She was more afraid of treatment than she was of death.

 

At 5/24/2005 9:14 AM, Blogger decrepitoldfool said...

As Paul said above, seeing the doctor can be a frustrating experience. What is it with you doctors and ibuprofen? I have chronic pain, which I am certain will one day mask the condition that will end up killing me, and the doctors in my HMO don't seem the least bit interested in finding out what causes it or how to correct. Because it makes sleep difficult I am chronically fatigued and just don't have energy for that battle or any other. I am too busy doing the best I can with my life.

Anyway, I have learned that the doctor is unlikely to listen.

 

At 6/30/2005 7:02 PM, Blogger Norma said...

Well, let's see, your options are slash, burn or poison. And you call it denial?

 

At 7/07/2005 12:27 AM, Anonymous HCN said...

Dear Norma,

You forgot the fourth option: Death.

Did you read what the symptoms were? Here:
"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. "

Oh, yuck. Even if it were something innocuous, I would want it removed!

 

At 9/27/2005 9:46 PM, Anonymous veronica said...

I can share my saga. I was an RN and therapist, gave up my career to paint fulltime at 48. I worked eight years for a Stanford trained oncologist.

I felt a lump medially which was painful and had the characteristics of bc. My gyn ordered a mammo four years in a row which did not image out a mass. I insisted on an US five years out because I could see the dimpling. My gyn maintained bc does 'not hurt'. Fast fwd. The US showed a 2.1cm tumor and I can say when I walked into my surgeon's ofc without an appt, films in hand, he was stunned but supportive. The tumor had deeply invaded the muscle and my prognosis is poor. I intuitively knew this was bc early on.

 

At 11/08/2005 9:37 PM, Anonymous Maryl said...

Speaking as a person who prefers to avoid doctors, yet who has a interest in things medical, I can tell you one reason for not going. Weight. I'm a plus-sized individual. Have been for 23 years, since a back injury put paid to the forms of exercise I enjoy. It doesn't matter what is wrong with me: the usual response is, "Well, if you'd lose some weight, it would clear up." Friend of mine, also plus-sized, had complained to her doctor about menstrual irregularities for several years. His response was always, "Well, if you'd lose some weight, it'd clear up." In January of 1994, she was diagnosed with Stage 3 ovarian cancer. By September 24 the same year, she was dead. I nearly died because a doctor attributed the pain in my back and side to "muscle stress due to obesity". Right 2.5 months later, when I had turned vivid yellow, I finally was referred to a surgeon who diagnosed gall bladder problems. Had the gall bladder out and spent 4 days in the hospital recovering from a reaction to anesthesia. Give me an alternative, and I'll avoid most modern medicine.

 

At 12/13/2005 6:20 PM, Anonymous Anonymous said...

I have to tell you about my mother-in-law. She is 53 years old and was diagnosed 4 yrs ago with bcancer. They wanted to remove her breast...she choose to leave it in "God's hands" and has refused medical treatment. We are a close family, she has decent insurance and the means to pay for anything she desires...yet she decides to rely on faith to heal her dispite badgering by her family and friends. Now, she is going downhill fast, her arm is has swelled to double in size and her breast has gone from swelling very large to back to normal size in recent months (we can see this through her clothing). If we ask her about it, she says she is fine and changes the subject. She started smelling about a month ago and today I asked her if I could see her breast...to my horror it looks like ground meat. I am sick now thinking of it. I told her she must see a doctor (I'm thinking let's get Hospice involved) and she says, "Yes, I'll see a woman doctor to see what they can do". I feel certain it is too late and very sad that she even thinks there is a remote change that she will survive this. Any suggestions, comments?

 

At 12/13/2005 6:31 PM, Blogger Orac said...

Please e-mail me privately. This is a very old post, and it's highly unlikely that very many people read it any more.

 

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