Secondary Polycythaemia - Not a blood cancer?! (contd)

[MancMermaid]

continued from previous post..........

could somebody please clarify and confirm for me whether or not Secondary Polycythaemia is classed as a blood cancer?

Anyone else out there have secondary Polycythaemia? - how do you understand it? - do you use the term 'blood cancer'?

Feel like I'm driving myself round the bend. Don't know what to think and/or start trying to get my head around (or not?!)?!

What if now that I'm at The Christie hospital - I'm wasting everyone's time (and shouldn't really be there?!)

[william-Indo]

Maybe this link could help you understand the secondary PV or Secondary erythrocytosis

patientpower.info/myeloprol...

Cheers

[mhos61]

You may want to look at the profile of member ‘Aime’. She had a similar story to yourself with regards to PV verses Idiopathic erythrocytosis diagnosis. I’m sure she wouldn’t mind you private messaging her, she will be very knowledgeable on this situation.

I would also ask your team if have they ruled out ‘Exon 12’ mutation, 3% of PV patients present with this mutation. My feeling is they probably have as you’re at the well renowned Christie Hospital, but for your own peace of mind you need full clarification.

[MancMermaid in reply to mhos61]

how would I see another member's profile and/or find 'Aime'? thanks.

[RoundTheWorld]

At the top of this page click on 'Members' under the smaller MPN Voice logo (top left). When the screen refreshes there is a search box for you to look for a specific contributor.

[hunter5582]

Secondary Polycythemia is not a blood cancer. It is erythrocytosis caused by another condition. While it is possible that the other condition is some form of tumor, that is something your care team would have checked for. What is your primary diagnosis that was identified as the cause of the erythrocytosis?