Diagnosing MDS

Posted by pixiesusan @pixiesusan, 3 days ago

As some of you may remember, this journey started for me "formally" (meaning it was caught then, but I had low platelets for at least a few years and saw doctors during that time, and not one of them mentioned the low platelets) in 2017. I was sent to Dana-Farber. In 2022, I guess they figured out I had the TP53 mutation. I'm classified as CCUS. At my appointment in May, they ran a Rapid Heme panel test, and it seems I also have something called TERT. I will see the Dana genetic team soon and get a skin biopsy.

I'm on a variety of Facebook groups for MDS, and it seems there are people there with low platelets (many with numbers higher than mine), and they are diagnosed with MDS.

So my question is, what is it that makes one be diagnosed as MDS? I don't want to have MDS, but I'm not entirely sure why some people have higher platelets than mine (red and white blood cells in the normal range), and are MDS watch and wait? Is it one simple thing, or is there a lot involved in that diagnosis?

Thanks for your help in understanding.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Please sign in or register to post a reply.