[Guy L]

I just signed up, so I thought this would be a good place for a first post. I got my official MDS diagnosis a month ago today (on June 20) following a biopsy and tests of marrow samples drawn last April. As probably most people here, this is a condition I had never heard about before. Just telling anyone about it draws the same blank. Thankfully the internet answered an awful lot of questions, but actual patient experiences can only be found on forums like this, especially for an illness that is rare enough, that your chances of personally knowing someone else with it are remote.

My first question is: how much time do people typically see between the first signs of the disease (usually from abnormal routine blood tests) to a formal diagnosis? In my case blood test results started to show lower levels of platelets and WBC almost 4 years ago (Sept 2021). My family doctor had me do blood tests every 6 months to see if a trend could be observed, and only got me to see a hematologist this last spring. My first meeting with him was a discussion of my previous blood test results, and he said "this looks like MDS", along with an explanation of what it meant. A month later came the biopsy and samples, and then the diagnosis 2 months later. Is this typical? In the reading I've been doing about risk levels, mean survival times, etc it always mentions "starting from the time of diagnosis", but very little about the typical time between the actual symptoms and a diagnosis, hence my question.

One last test result is still pending but enough is known to put me in the "low" risk group. I'm still learning a fair bit of the lingo from this forum and other sources, and everything is done in French here, though it is fairly easy to see the equivalent terms. I know I have ringed sideroblasts, my mutations are ASXL1, IDH2 and U2AF1. There is a chromosome test result still pending. There is a good cancerology team here in the Montreal region and they seem to have things under control, so I'm quite hopeful. Once completed, my test results will be looked over by specialists and a recommendation will be made about any treatment, or just close monitoring of my periodic blood test results to see if anything changes. I'm told that the relative stability of my test results is a good sign, and honestly I can't say I'm feeling any symptoms or anything unusual yet.