HI Katy, I hope that you have had a good explanation. I was diagnosed with pre-fibrotic PMF in March this year and have been trying ever since to get my head around what that means. As it was only classified as a distinct diagnosis in 2016, I think there is still a lot to be learned from the patient journey on this. In Australia, the Cancer Council and the Leukemia Foundation have put out a couple of guides for clinicians and patients on MPN that help with what questions to ask and what the care pathway is. You may find them of some use:
https://www.cancer.org.au/cancercareguides/myel...
https://www.leukaemia.org.au/blood-cancer/optim...

And this article is interesting on the treatment of early PMF (but I caution that is is a discussion paper and one person’s view):
https://link.springer.com/article/10.1007/s1189...

Optimal Care Pathways for myeloproliferative neoplasms (MPN) - HCP - Leukaemia Foundation

https://www.leukaemia.org.au/blood-cancer/optimal-care-pathways/for-healthcare-professionals/myeloproliferative-neoplasms-mpn/

Myeloproliferative neoplasms | Guide to best cancer care, diagnosis and treatment

https://www.cancer.org.au/cancercareguides/myeloproliferative-neoplasms

Thanks! Yes, I saw the doctor and she explained everything very well. Grateful I went to Cornell and they did the bone marrow biopsy- my local oncologist had no intention nor saw a need for one. Always best to obtain a second opinion from a specialist.

Sounds like they caught it early and you don't have much scarring yet. 😁