Dear Kim,

This idea of not looking up your diagnosis online told to patients by doctors is old-fashioned and at odds with having a rare chronic blood cancer.
Pubmed is a good resource, and so are pages from cancer societies and specialised haematological journals. Google Scholar is also OK for searching for studies on MPNs.
We need to be informed regarding our illness, and often we know more about our specific mutation and our illness than all the medical professionals we see, except our hematologist or our MPN specialist.
Plus, MPNs are very individual, and as we live in our bodies, we know them better than anyone else.
If it weren't for my reading of scientific papers and for my insistence, and for efforts to put together a family history of health issues, I would not have a diagnosis of ET and it wouldn't have been known that my ET is inherited or that other 2 family members, my dad and his mom, also had an MPN. Inherited MPNs tend to be treated differently and have a different prognosis as compared to spontaneous ones.

Not all patients feel better not knowing what they have. Quite the opposite for a good chunk of us for whom agency means mental health. The more we know about our illness, the better grasp we have on the overall situation.

I hope the doctor giving second opinion is competent and offers you good information!

Many hugs of support,
Tatiana

Yes, ET is a chronic cancer.

Of course that's scary.

This is where you can vent your concerns and get your questions answered. No matter what you're going through, someone else here has been through it too.

Dead Kim,

MPNs are classified as chronic blood cancers by World Health Organisation:
https://pubmed.ncbi.nlm.nih.gov/29426921/

My doctor was also reluctant initially to use the word cancer thinking they might scare me, but they did more harm than good to try to hide that from me, as those around me thought it was something like a mild allergy, when in reality this illness was and still is brutal on me. I had 2 TIAs and one mini heart attack in less than 1 year, severe headaches, dizziness, fever, bone pain, exhaustion, etc. and they were telling I should be fine. 🤦‍♀️
When doctors, for whatever reason, do not inform patients this is a chronic cancer, they indirectly deny those patients access to support, anything from disability support, to occupational therapists and physiotherapists, financial support, access to medication and trials, etc.. And relatives might think MPNs are a walk in the park, so they might refuse to believe us or help us navigate health care, offer a hand when unwell, etc.

It might seem a bit too much to digest the ominous chronic blood cancer diagnosis, but the more we hear it and allow ourselves to feel the fear and pain it might trigger, and know that it is just a name, the less it will have a hold on us in the future. People with Type 1 diabetes call their life-long incurable illness for what it is, and maybe we should also call our chronic blood cancers for what they are.
I might seem brave today, but it took me a while to get the strength to admit to myself ET is a chronic blood cancer. It is a process.

Many hugs of support,
Tatiana

The 2016 WHO classification and diagnostic criteria for myeloproliferative neoplasms: document summary and in-depth discussion - PubMed

https://pubmed.ncbi.nlm.nih.gov/29426921/

Yes, because mutated stem cells are over producing megakaryocytes which produce too many platelets, which also Function abnormally. .
How high are your platelets? What treatment are you taking? What is your Specialist telling you?

I have ET as well treated with 500 mg hydroxyurea three times a week.
Good luck!

Ruth

I also was told by a doctor that it wasn’t cancer. She told me to ignore anything on the internet. Found a second doctor who listens and helps so grateful it is treatable