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We are stronger together

October 17, 2014

While in remission, and still healthy, I hope to be able to do something to help other people with the same cancer I have. There is a real need for this because of the rarity of this disease. Consider the fact that ovarian cancer strikes only 1.3 percent of all women, according to the National Cancer Institute’s data page. Then consider that my variant of cancer, malignant Mixed Mullerian Tumor or ovarian carcinosarcoma, is responsible for only around 2% of that 1.3 percent.

Yes, we MMTs are “special.” But believe me, it’s not so great, being “special” in this particular way.

Because we’re so far and few between, there’s no institutional support for us. I’m in a local ovarian cancer support group, but my prognosis is significantly worse than my peers in the group, and my disease is physically different from theirs (carcinosarcoma can occur in men as well as women). My peers in the group have approximately a 45% chance of still being alive in five years, while I can expect only one to three years (and I’m already ten months into my first year). My disease responded somewhat to the chemotherapy given for ordinary ovarian cancer, but MMT tends to recur aggressively simply because the chemo is not a tailored fit. Pharma companies are not interested in researching drugs that treat cancers as rare as mine, and this situation won’t change anytime soon. So we MMT patients are given drugs that work better for other people’s cancer than they do for us. There’s no national website for our disease. We’re overlooked, ignored, and in the way.

I want support of a kind that I can not find online and which is not really available locally. It seems obvious that since I can’t turn to others, what I need to do is to list the little that I DO know, for the benefit of that small handful of people out there who are also looking for support with MMT/carcinosarcoma.

I don’t know whether a gene or an environmental exposure causes this cancer. What I do know is this: I suspect that inflammation could be part of the problem. I have a tendency toward inflammatory autoimmune disorders, as was shown by my genetic health testing. Six out of the top nine ailments that were identified for me based on genetics were autoimmune conditions. Ten years ago my health was ruined when my young son brought home a case of Fifth Disease from school, which I then caught. Fifth Disease is human parvovirus B19 and is usually a childhood disease. Like mumps or measles, human parvovirus is much worse if you come down with it as an adult. Parvo apparently has the ability to induce, or mimic, autoimmune conditions in susceptible individuals, and I appear to be one of these unfortunate people. The parvovirus wrecked my immune system, which began to attack various parts of my own body. A link between inflammatory disorders and cancers has been known for decades; celiac disease, rheumatoid arthritis and lupus are all linked with specific kinds of cancers. I cannot prove it, but I believe that the inflammation from the parvo planted the seeds that would become my cancer ten years later. A web search will show that cancer patients tend to fall ill with human parvovirus far more readily than the public at large due to having compromised autoimmune systems; but I wonder whether their illnesses are in fact old parvo infections that have lain dormant in their bodies until being reactivated by illness, the way shingles is reactivated chicken pox.

It’s likely that stress also plays a role. The year-and-a-half before my diagnosis, I worked a second job that was enormously stressful, and this cannot have helped anything that was already going on inside me at the time. And just before my symptoms went critical, I completed a round of powerful antibiotics because of a cat scratch. Antibiotics of course kill off our internal biomes and can affect our balance of health. Both the stress and the antibiotics could have been contributing factors.

I would like to hear from other people, women and men, who are currently dealing with MMT/carcinosarcoma. I would like to compare backgrounds and see whether fellow patients also have a history of inflammatory disorders. We also need to see whether we share any other characteristics in common: stress, antibiotics, ethnic background, even body mass index. (A note of interest: obesity is a risk factor for ovarian cancer; yet all of the seven women in my ovarian cancer support group are slim. Do slim patients tend to survive longer?) If we can compile facts about what we have in common, we could be of great help to future researchers.

Far too little is being done to learn more about this disease and what causes it, and unfortunately, patients have a habit of dying very early on. We need to know more. If you find this post, please contact me at the email listed on the “About” page of this blog. Together, I hope that we can come up with enough information to post online for others.

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6 Comments
  1. Deneise Hueston permalink

    Carrol: I cannot begin to say how much I admire your strength. Three years ago, my late husband Allen died of lung cancer.

    Cancer world is its own horrid universe.

    Thanks for keeping folks posted and for modeling courageous beauty. We are stronger together. Namaste, Deneise Self Hueston

  2. claire permalink

    your service to others with MMT will live on and on!

  3. I agree with what Claire says.

    Your desire to offer what you do know is great in itself, and the fact that you’re an excellent writer adds to the power of what you say.

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