The deadly power of denial, part 2: it's not always denial

I've been thinking about denial again.

It started a couple of weeks ago, when, inspired by a couple of patients I had seen or heard about, I wrote about denial in cancer, specifically how it can lead to horrific delays in treatment. I described a couple of recent patients and a patient from my residency, all of whom presented late with locally advanced breast cancer. In one of the cases, the tumor was bleeding, necrotic, and rotting. Yet these women somehow managed to hide their conditions from their families and in one case her husband. I had thought I had seen or heard it all--until last week. When it rains, it pours, I guess.

This is a story that shows that it's not always denial that leads to a delay in diagnosis until the cancer is very advanced. The specific details have been altered a bit to try to make sure there's no patient-identifiable information, but the basic story is true.

I was in clinic with a patient. Like many patients whom I evaluate, she presented with an abnormal mammogram. While I was taking her family history, she told me her sister had had breast cancer. In evaluating patients with breast abnormalities, family history is a very important piece of information, as having a first degree relative who had breast cancer before menopause is a strong risk factor for developing cancer. When I asked her how old her sister was when she got cancer (to find out if she was premenopausal or not), she told me around 46. When I asked her what happened, she told me she had died.

Then she told me more than I really needed (or probably wanted) to know.

It turns out her sister had collapsed and been taken to the hospital. In the course of her evaluation for her collapse, the diagnosis became painfully obvious.

Breast cancer.

Further evaluation demonstrated that the patient's sister had widely metastatic disease, including brain metastases, which had led to her collapse. She lived only a couple of weeks, and then succumbed to her disease. The patient told me that, after her sister's collapse, she had gone to her home. There, she had found large quantities of bandages, many of them bloody. Her sister had been hiding a large, fungating, bleeding breast cancer for many months, if not years.

I found out more. Her sister worked a low wage job and didn't have health insurance. Not only had she managed to hide her condition from her family, but also from her coworkers. After her hospitalization, she told my patient over and over that she didn't want to be a burden.

That's right. She died what was probably an entirely preventable death at a relatively young age because she didn't want to be a "burden." No doubt she suffered from that fungating mass on her breast for many months. Very likely, once the cancer progressed to metstastic disease, she suffered other symptoms that she somehow managed to hide, perhaps bone pain, neurlogic symptoms such as weakness or dizziness, perhaps abdominal pain. Although there is no way for me to know, I speculate that denial might have played a role early on in her disease. However, given what happened and what her sister told me, I have to conclude that, at some point, she realized what was wrong with her and consciously chose to hide it from her family, friends, and coworkers. She chose death over life, all because of a desire not to be a "burden."

Leaving aside the issue of how our health care system sometimes imposes grim choices on the working poor who are unfortunate enough to be stricken with serious disease, I still have to wonder how such a young woman could come to such a decision and then have the fortitude to stick with it as her disease progressed. Personally, to some extent, I can understand not wanting to be a burden on anyone. My grandmother died a few months ago, after a prolonged decline. Her last three years or so were painful to watch, as a once-vital woman, who was a tennis and badminton champion in her youth and still played well into her late 70's (even after valve replacement surgery 12 years ago), slowly lost her ability to walk (due to spinal stenosis) and her short-term memory (due to mild dementia). Were it not for her husband's financial means, she would certainly have ended up in a nursing home or living at my mother's house. Certainly I can understand not wanting to live out one's old age like that. I certainly don't. I doubt anyone does.

On the other hand, breast cancer is not the same as slowly degenerative diseases of age. For such degenerative diseases of old age, there is little or no hope of significant improvement, only of either halting or slowing the progression (particularly given that my grandmother was considered too high risk to operate on her spinal stenosis and that her mild dementia was from multiple mild strokes). Unless it is metastatic to bone or other organs, breast cancer is treatable, with a relatively high probability of success after surgery, chemotherapy, and radiation if the tumor is discovered early enough. And, after treatment, her chances of living a normal life would have been quite good. If only her fear of "being a burden" upon those she loved hadn't kept her from seeking medical help much sooner, it is very likely that she would have lived. I can't help but wonder how much of her fear of becoming a "burden" on her family was due to the financial aspect of the problem and how much might have been due to ignorance of how treatable breast cancer can be. If only she could have encountered someone who could have shown her that breast cancer treatment is usually only a temporary (albeit relatively long-term, several months to five or more years) thing. If only there were a way to cover catastrophic illness for the working poor that didn't put the fear of huge, unpayable medical bills into the hearts of so many. If only...

But, then, none of it matters anymore, does it?