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The Roller Coaster of MDS

MDS is a rare form of cancer with its own unique characteristics. Here is one patients perspective on the experience of having MDS.
“You have myelodysplastic syndrome,” the oncologist told me soberly. “The average lifespan for your type of MDS is 104 months.”

I couldn’t pronounce this rare disease, much less spell it! I stammered back that we had caught it early, so what did this mean? She explained this type of cancer didn’t have stages.

It took me a while to recover from the numbness and shock. The only symptom I had entering the doctor’s office was anemia, with no bleeding, no lump and no warning, other than being tired.

I began to research this strange-sounding diagnosis. Some articles I perused called it cancer, other a mutation of the cells. Further research revealed the average length of time to live ranged from a couple of months to nine years, depending on which type of MDS one had. I can’t describe how confused and discombobulated I felt.

After more reading, I realized I was lucky because I had the type of MDS that usually allowed me to live the longest amount of time. I also found out that doctors didn’t originally call this a cancer, but later they reclassified it because the process started with a single cell mutation like every other kind of cancer.

Eventually, I gave up reading about it and decided to face the challenge of living with it.

This is a lonely cancer to endure. There are several support groups for breast cancer and other types, but the numbers of patients are so small for MDS that support groups are difficult to form. The hospital doesn’t have navigators for this type of cancer. There was no one available to ask what patients went through until I found the great magazine, CURE.

I was originally very naïve. I was placed on an oral pill called Revlimid once a day. Since many people have drastic surgery, radiation and IV chemo, I figured this would be a cakewalk.

Talk about this article with other patients, caregivers, and advocates in the Myelodysplastic syndrome CURE discussion group.
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.

She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
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