I'm a 35 year old microbiologist and molecular biologist with systemic mastocytosis, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Adrenal Insufficiency, and an assortment of other chronic health issues. My life is pretty much a blast.
I was engaged in casual small talk with someone when the subject of my illness came up. I showed my PICC line by way of explanation.
“You have cancer?” he asked, voice low.
“I have systemic mast cell disease,” I answered. I knew where this was going.
“Oh. Well, at least you don’t have cancer.” His whole body language changed. It wasn’t cancer, so I wasn’t worthy of his sympathy. Not that I want it, really; but I’m worthy of it, I think.
At least I don’t have cancer.
In the US, people tend to categorize illness into three groups: cancer; physical illness that is not cancer; and mental illness. The amount of respect and understanding you are afforded descends in that order. To most people in the US, having a verifiable physical illness gives me more credibility than someone with mental illness (although it shouldn’t), but less than someone who has cancer. Even if that cancer has been treated successfully and is in remission.
My disease is sometimes considered a cancer, but sometimes isn’t. It depends on the organization. Some hospitals treat it as cancer; some treat it as an immunologic disease; some treat it as a hematologic disease. It’s so rare no one can agree on what’s best.
My disease is classified as a myeloproliferative neoplasm. This is a fancy way of saying that my body makes too many cells in the bone marrow. Know what else are neoplasms? Cancers.
My disease is usually propagated by a mutation in an oncogene. Onco- is a prefix meaning “cancer.” Know what other diseases are caused by a mutation in this same oncogene? Cancers.
If you have involved systemic mast cell disease like I do, and you present to most hospitals, do you know what department you will be seen in? Oncology.
If you have smoldering or aggressive systemic mastocytosis, systemic mastocytosis with associated clonal non-mast cell lineage hematologic disorder, or mast cell leukemia, do you know what kind of therapies you will receive? Therapies designed to treat cancers. This is mostly chemotherapy in doses that are roughly equivalent to those used for – that’s right – cancers.
Cancer is a broad term. It refers to over 200 diseases that involve unregulated cell growth. Hey, know what other diseases involve unregulated cell growth? I bet you do.
There is massive variation in morbidity and mortality among those 200 diseases. The term cancer encompasses diseases like pancreatic cancer, for which 5-year survival is 6.7%, even when identified in early stages, as well as thyroid cancer, for which 5-year survival is 97.8%. When looking at all types of cancers, 66.1% of patients are alive after 5 years. In early stages, some cancers require minimal or no treatment at all. Some cancers have become essentially chronic diseases through innovations in drug therapies. Some offer the promise of remission for the majority of patients. And some are fatal, always.
There is this truth that doesn’t get discussed openly a lot in the mast cell community: that some of us will die from it. While the majority (SM and CM) won’t, life expectancy for SM-ANHMD averages 85 months (see paper here:http://www.ncbi.nlm.nih.gov/pubmed/24465546); for ASM, 41 months; for mast cell leukemia, 6 months. Many of us suffer progressive organ damage and repeat anaphylaxis, and eventually it kills us.
If mast cell disease was classified as cancer, insurance would be more likely to cover my therapies, including reconstructive surgeries, if needed; employers would be less likely to terminate me for illness-related absences; I wouldn’t be limited to a handful of treatment facilities; I would be more likely to have my pain controlled; I would be less likely to be referred to a psychiatrist when my symptoms couldn’t be managed; and I would have been diagnosed faster. Much faster.
There are obviously other aspects to living (or surviving) cancer aside from survival. There are financial issues due to loss of work and the general astronomically high expense of being sick. I know about that, as I have spent more than twice the cost of my education on my healthcare, all while having decent, employer-paid insurance. That’s just what I have paid out, not what I accumulated in debt. One difference here is that there are a significant number of charitable organizations dedicated to helping cancer patients pay for their treatment, or to assisting with incidental things, like transportation, cooking, etc. There are no organizations like this for me in my state. There is exactly one that I know of.
Cancer patients and survivors may also have to contend with body image issues due to disfiguring surgeries and tissue/organ removal. I have multiple scars from biopsies, tumor removal, organ removal, and am the proud owner of a colostomy. I would contend that gives me an idea of what it’s like to be disfigured.
For many cancer patients, there is the chance to become a “survivor.” There is a chance that their disease can go into remission. That will never happen for people with any type of mast cell disease. There is no cure for our diseases. For those that need chemo, it is essentially a lifelong process of on for a year, off for a year, or something to that effect. I personally know someone who has been on chemo for nine years.
The cancer “equivalent” of advanced mast cell disease, which I estimate to be Stage III chronic myelogenous leukemia, provides a 95% chance of 5-year survival. That would be an improvement for many with mast cell disease.
I want to be very clear about something: I do not have a problem with cancer patients or survivors. I feel a lot of empathy for them, especially as we have a lot of shared experiences. We go the same places, see the same doctors, take the same medicine, have the same procedures. I know what it is like to have a doctor tell you how long you are likely to survive. I know what it is like to take dozens of pills a day, to spend 20+ hours a week at the hospital, to be so nauseous that you can’t sleep and so tired that your vision is blurry. I know what it is like to wonder if you will be able to do all the things you want to do before you die.
I have a problem with the idea in American society that physical illness is either cancer or not cancer, and that “not cancer” is inherently less severe. It particularly bothers me because advanced mast cell disease is so similar to blood cancers. But that’s not really the point. Is advanced multiple sclerosis less severe than prostate cancer, for which 5-year survival is 98.9%? Is HIV? Diabetes? The fact of the matter is that some people with HIV take their medications and exercise certain precautions, but otherwise live a pretty normal life. Someone with diabetes, a very well-known and manageable disease, gets a difficult to treat infection and they die. You can’t say cancer/not cancer because disease progression is inherently individual. Two people with the same disease can have completely different experiences.
The point is that disease is disease. It all sucks. None of us deserve any of it. We should all be afforded the same compassion and understanding. I love my life, I really do, but this shit is hard. It is really, really fucking hard.
But, hey! At least I don’t have cancer.