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.