I am the 1% – Guest Post by Greg Smith MD

It is my great pleasure to host a guest post by Greg Smith MD, an American psychiatrist who blogs his “mental health musings” at gregsmithmd.com. We sisters in mets often feel sidelined by the breast cancer awareness movement, but Dr. Smith draws our attention to an even more marginal group: women suffering from both breast cancer and schizophrenia.

I am the 1%

Schizophrenia affects 1% of the population in the United States. Many of these patients are women. Patients with schizophrenia and bipolar disorder are 2.6 times more likely to develop cancer than the general population according to one Johns Hopkins study.

Just because they have a diagnosed mental illness, these women are not immune to the development of serious medical problems such as diabetes mellitus, hypertension, heart disease, and cancer. Some studies have gone so far as to say that merely having a diagnosis of schizophrenia is a risk factor for developing other major medical illnesses such as cardiac disease.

Breast cancer, prominent already in international discussions of illness, research, prevention, staging, treatment strategies, and cure, is no respecter of women who already suffer daily from schizophrenia.

This post is not to go through the basics of the presentation, diagnosis, staging and treatment of breast cancer. There are many resources one can study to learn more about that in as much detail as desired. It is, however, meant to make you think for just a minute about how this illness affects women whose view of the world is already skewed, whose cognitive processes are already impaired, and who are already prone to anxiety, depression and psychosis. Suicidal ideation, a risk in patients who feel pain that will not go away (physical or psychic, which may actually be a bigger risk for self-harm), may be a serious complication of an illness such as breast cancer as well and should not be ignored.

Women with schizophrenia have trouble cognitively, affectively and with their perceptions. That is to say, their illness impairs their thinking, their mood, and how they see the world.

Now, imagine that you have dealt with a major psychotic illness such as schizophrenia for two decades. You developed a thought disorder, auditory hallucinations and paranoid delusions in your early twenties, you were diagnosed with schizophrenia after an initial hospitalization that was very traumatic to you, and you have taken antipsychotic medications for years in order to control the voices that plague you and the fear that grips you every time you go out in public. You function fairly well with the help of family and friends, and you have a team of caring mental health workers who support your ongoing recovery. You are by no means well, and you have never gotten back to your baseline functioning after your initial diagnosis, but with treatment you are able to live independently and enjoy your life.

Now, in your forties, you discover a lump while taking a shower. In the fog of the steam in your bathroom and the fog of the medications in your brain, you may not fully understand what this means. You may ignore it completely. You may immediately hear the chorus of voices in your head commenting. See? We told you so. You’re in for it now. You’re going to die. You’re going to die. You may experience an exponential rise in anxiety because you had an aunt who died from breast cancer.  Just because you have schizophrenia doesn’t mean that you are immune to the sudden shock, the denial, the anxiety and the sheer terror of thinking that this might be cancer.

Now, this is where it gets tricky. Whereas a woman without mental illness might deny and rationalize and delay going to her doctor to have the new-found lump checked out (all perfectly expected responses to this very frightening experience, yes?), a woman with schizophrenia already walks a very precarious tightrope between independent functioning and clinical illness. Her balance is delicate. Any little stressor might be enough to upset her equilibrium and cause her to fall. A new physical illness in one who already deals with psychosis and disordered thinking every day may be just enough to precipitate a marked decrease in ability to perform self care and remain independent.

Once she does realize that this potentially serious finding must be checked out and she does get to her doctor, the problems don’t stop. There are issues of getting through diagnostic tests, informed consent, discussions of treatment options, explanations of surgery versus chemotherapy versus radiation or combinations of all of them.

If you have had breast cancer, do you remember the first time you were told? Do you remember the first time your doctor discussed treatment options with you? Were you in shock? Were you afraid? Did you have someone with you, a trusted family member or friend, another set of ears to hear what you simply could not hear the first or fifth or tenth time?

Women who suffer from schizophrenia are often alone, with no family members active in their lives, no loving and supportive spouse at their side and few friends who can be there for them. They hear this news with a backdrop of paranoia, hallucinations and disjointed thought that makes it very, very difficult at best to even consider any of their responses to the doctor about treatment “informed consent”.

Clear these hurdles and the treatment and recovery phases are still very difficult for these women. Some studies have revealed that there is a very real danger of violent acting out in women who are frightened and disorganized as they face potentially life threatening illness. While most psychiatric patients may be victims and not perpetrators of violence, cancer pushed coping skills and emotional reserves to the limit.

Finally, simply having a diagnosis of schizophrenia may shorten one’s life by as much as fifteen to twenty years. Adding a diagnosis of breast cancer to the mix, especially if the disease has progressed and is metastatic, is potentially devastating to a woman who has already lost much of her ability to live fully, love deeply and experience the world as most of us can.

The story of the 30%, as articulated by this blog and others like it, is very important.

The story of the 1% is often lost in the hoopla, but is no less important.