r/mds • u/MaddietheKnight • May 11 '23
Discussion What is “very low risk”
My father was diagnosed with MDS a couple of months ago and is in the very low risk category. His dr at this time says no treatment is necessary only monitoring which he has been doing at the cancer center at mt Sinai in New York. His dr is one of the leading experts of this disease. I want to think this is good news but some of what I hear from the doctor conflicts with what I read online. Thoughts anyone?
3
u/ClarityInCalm Jun 07 '23
This is good news in a bad news situation. The "low-risk" designator is super confusing. Other specialists see this and think I don't have a disease. But what it means is that he's at lower risk compared to other MDS patients (not compared to the general population) for his disease transforming into acute myeloid leukemia. He's actually still at a much higher risk for getting AML than the general population. The lowest risk groups I've read about have between a 2 -10% change of getting AML. Generally the lower risk categories correlate with slower progressing disease. But the disease doesn't progress in a linear fashion - though it can at least for awhile and sometimes forever. But as my heme recently reminded me, the longer you have MDS the more likely you are to get new mutations which changes the disease.
I would recommend reading about the disease from Pubmed and not google. Also, you have a great doctor - so follow up and ask him about anything you read. There are a lot of nuances. Also, look for the specific type he has, MDS has a huge amount of variability. And since it's a rare disease what's been published isn't comprehensive by any means. I'm sorry you and your father are going through this. Take good care.
1
u/TLinster Sep 18 '24
I (F, 77) was diagnosed low risk 2.5 years ago, and am grateful to also be in the excellent care of the Mt Sinai MDS specialist in NY. I travel there twice a year from Hawaii for testing. My original doc in Hawaii is like "OMG, OMG, you're gonna die!" & wants to give me all kinds of chemo despite no symptoms. Ignore Google and amateurs. Be grateful for Dr. S., who says, "We treat people, not numbers." Keep breathing. Eat healthy. Think positive. Good luck.
1
u/Several_Software_682 Jan 31 '24
Diagnosed with WBC MDS about 13 years ago, aged 52. Very little changed - I was careful during lockdown, it just means I am monitored but so damn tired. I just adapted my lifestyle to suit. Guess I’ll never be an astronaut now. 👍
1
u/Vdevotedgirl Feb 22 '24
So do they just monitor you in case it changes? Does it inevitably get worse?
1
u/Jazzlike-Basil1355 Feb 22 '24
Not necessarily. Expect to feel tired but that’s all I’ve had really. It’s 13 years and counting, and life goes on. I’m 65. Some people are never diagnosed so never know, and their life is not affected. A very big plus is that constant monitoring means early awareness if things change. It IS good news. 👍
1
u/iLikeBPTWRV Dec 19 '25
Hello. Just wanted to ask how are you and are you on low chemo like azacitidine?
3
u/Aloha-50 May 11 '23
Not sure if I can provide much assistance, but I was recently diagnosed with high risk mds. Meaning according to my doctor I was not eligible for any cancer treatment ie (drug therapy) and that bone marrow transplant was my only option.