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I was told it was pre-cancer, but I believe recent research findings are now calling it a form of blood cancer. I think it will take a while for it to seep through to all medical professionals… it also is not cancer in the traditional sense as it sometimes requires no treatment at all, just monitoring.
Hi Barbara, I am 27 and I was diagnosed with MDS RMCD 7 years ago (age 20). My MDS is currently “watch and wait” meaning I have the condition and my counts are below normal but not low enough to cause too many problems or need treatment.
I believe there are many patients on watch and wait for years, or on minimum treatment for years.
I am also worrying about future children, I think pregnancy is fine and closely monitored, I dont think there is much research on whether it can make your MDS worse, well I can’t find any anyway!
However, I don’t think MDS is hereditary, but there is new research to suggest that certain genetic defects can cause MDS, and those defective genes can be passed on to any children you may have. There’s also the chance they have the gene but it doesn’t cause MDS at all, or it could cause other illnesses, there is no way of knowing which is a shame! If you are diagnosed with MDS then they should do genetic profiling on you and then I believe you will see a specialist on this. My genetic defect is GATA2.November 22, 2018 at 7:00 am in reply to: Low risk MDS patients who opt for no medical/drug treatments #44506
Hi Tam – very late response to the thread but I found it during some internet searching!
I just want to say how reassuring it is to see there is someone out there who (probably) has had MDS for years and luckily it has not progressed in a serious manner.
I am 27 years old diagnosed with MDS RMCD back in 2011 (I think) and have been in watch and wait ever since with no treatment, there really seems to be a lack of young people with MDS that didn’t progress very quickly to AML. My counts are nearly all just below normal, with my neutrophils the worst (last count was 0.8 but usually they’re around 1.4 – 1.7). I do suffer from tiredness but its hard to tell if I am just tired from adulthood or actually am more tired than other people (ha), I do stay active but struggle with both strength and cardiovascular compared to all of my peers!
Anyway, to think that you *may* have had this for 27 years (I was born in 1991!) is helping me a lot, as I was 20 years old when I was diagnosed my coping strategy was straight up ignore it and tell everyone I am fine 🙂 as I am getting older I am getting concerns about how long this ‘watch and wait’ may or may not last. My hopes is my body has made do with it’s rubbish bone marrow production line and I will stay watch and wait until I am into retirement!!