[Joanne]

Originally Posted by Neil Cuadra

I don't think your mom is talking to the right doctors, Joanne, and that she should see an MDS specialist to get a more accurate assessment. MDS is rare, and her physicians may simply be uninformed about it. You and they can get basic MDS information from the Aplastic Anemia & Myelodysplasia Association of Canada, but a specialist can give a full evaluation.

Whether or not certain drugs are available in Canada, saying that they don't exist is simply incorrect, and drugs are not the only treatments for MDS.

It's also inappropriate for a doctor to tell her she has 4.8 years of life left, if that's how the doctor worded it (sometimes patients hear a different message than the doctor was trying to convey). Medical statisticians may report that a certain broad group of people in a certain age category live for an average of 4.8 years after diagnosis of a certain type of MDS, but that doesn't tell you what to expect for one individual patient. Although patients can do worse than expected based on statistics like that, they very often survive and live fairly normal lives for years after what these averages would lead you to believe. Also, patient statistics are based on years past, and new and better MDS treatments improve survival rates every year.

Thanks for the info.
I really do wish she would see another hematologist. This guy is suppose to be the "best" around here. I don't see how you can be considered the best when you hand over a piece of paper (printed off from the internet to boot) to a 63 year old couple and circle the medial survival rate of 4.8 years and say "I'll see you back here on July 8".....it's so frustrating. Because she is symptom free my parents are playing the "if we don't talk about it's not really happening" game. I don't think she would even consider seeking out a second opinion and because I'm only her daughter I can't make it for her.....