A good question to your hematologist is what she's going to do with a positive result. If there would be a treatment that would significantly reduce your risks and improve your life, the $1000 might be worth it. If she would just monitor your blood counts the testing might not be worthwhile. agree with the original physician response.Just wanted to comment on whether or not to do NGS for $1k. I think this is a little excessive if only for high Hgb. Id maybe try CALR mutation first. This is the second most common cause of high Hgb or platelets. Maybe do MPL. Also how are your platelets? And do you smoke by any chance or live at a high altitude?While PV can transition into a cancer, it is also easily controlled with things like hydroxyurea and therapeutic phlebotomy to keep your Hct down. Its not as scary as say full blown myeloid leukemia. Its something that is treatable.Just my 2 cents as someone who works in the field. Maybe bring these issues or questions up the next time you speak with your hematologist. I think the Pulm MD above also had a good thought about if any of these mutations come back positive, what does it do for your future monitoring and treatment?
This makes a lot of sense to me, appreciate you answering. I agree and defer mostly to the hematologist.It becomes a challenging question when the labs that were ordered (myeloid NGS panel) are quoted at $1K+ and I have to decide if I want to follow through on that.