Thal Minor and MDS Syndrome

Hello, I am new to the group. I have Thal Minor as well as my 82 year old dad and children 27 and 23. My dad has just been told he has MDS. But they didnt give him any more information. The dr said I probably have too.(thats what he told me mom at appointment) what? ive printed out all his blood test results and am wondering what do we do from here? his next appointment with hematologist is in November. He has always had the normal thal rbc counts but they have decreased to high 8s.  i had a son who died as an infant of rare cancer(not thal related) that was not easily diagnosed and then fatal. so i get a little freaked out with unclear information from drs. Any suggestions on how to move forward?

Please share this link with the appropriate doctor(s). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3934274/ It explains this phenomenon in regards to thal minors.

This passage specifically relates to what may really be happening.

In fact, we believe that the currently validated prognostic systems for MDS2,3 are not fully suitable and applicable to this category of patients, in particular when considering the haemoglobin levels. Indeed, under normal conditions, these patients have remained asymptomatic for many years regardless of their low haemoglobin levels. The current MDS classification systems may overestimate, at least in part, the weight of the haemoglobin values