Hello @twohorsepony, and welcome to the Forum - though of course I’m sorry about the diagnosis and the fear you’re carrying right now. Having different specialists giving you different timelines must be incredibly confusing and worrying on top of everything else.
The way Myelodysplastic syndrome (MDS) develops over time varies a lot from person to person, and there are a number of varying factors that come in toplay. You can read more about this here on our webpage ‘Myelodysplastic syndromes (MDS) prognosis’. Also if you don’t yet have our Myelodysplastic syndrome (MDS) booklet you can order it from our website here (for free): Myelodysplastic syndromes (MDS) booklet | Blood Cancer UK Shop
Whilst we’re waiting for other community members to hopefully reply, I’ve also had a look for some previous forum discussions that might be helpful to you (you can do the same via the ‘Related’ feature at the bottom of the page, or just by using the search bar at the top). There are quite a few members who’ve been where you are now - living with Myelodysplastic syndrome (MDS) and naturally worrying about the future:
- Being diagnosed with MDS - someone at 42 facing transplant and feeling scared
- New MDS diagnosis 45yo - about low risk Myelodysplastic syndrome (MDS) and anxiety about transplant
It sounds like you perhaps need to have another conversation with your team about why there are different views on the potential treatment timeline? Your medical team knows you best and sees you most regularly, so they’re best placed to help you understand what’s happening. Could you ask them to help you make sense of the different opinions you’ve been given?
If you’d like to talk this through with our clinicla nurses before approaching your own team, please do reach out to them on 0808 2080 888 or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services