I had a meeting with my consultant on Wednesday after having some more tests.
I have been diagnosed With Polycythemia JAK2 for over seven years now and they have been baffled as to why I still have very high Erythropoietin at 205 when it should be about 15. I have numerous venusections but the levels remain high.
The consultant has now stated to me that I need to go for a head scan because if all the tests I have had done so far prove negative as they have done then its possible I may have a small Brain Tumour which is causing the problem. Obviously I am quite worried now and wondered if anyone else has been in the same situation.
Looking at the links it shows that Polycythemia is a secondary to a brain tumour and not the other way around which technically means maybe the brain scan should have been done some time ago when they could not understand why i had it. I have always been told that my Polycythemia was Primary.
Happy New Year to you all. Noel X
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Hi Noel, sorry to hear of your worries, not a great start to the new year.
Sorry I can’t answer your question but I’m sure someone will be able to. The main thing is you get your health sorted out. Thinking about you, please let me know how you get on.
Sorry to hear you have all the additional anxiety at the moment. You can get secondary polycythaemia from EPO secreting tumours from the lung liver kidney and brain.. The latter seem to be more linked to the cerebellum which is the back of the brain involved with balance. They can be very slow growing and tend to be a vascular type tumour rather than a nasty progressive thing. I think if you have been diagnosed for 7 years the reassuring thing is if they do find anything on the brain scan it must be very slow growing particularly if you aren't having any symptoms of dizziness or headaches.
Have you had scans to check your kidney/liver as that can be easily done with an ultrasound scan?
Anyway good luck on Wednesday with the consultant- at least if you have the brain scan they will be able to rule that out as a cause. The other thing you could do as an interim is to get your eye pressures checked with your optician as they can be raised if their is increased intracerebral pressure from things like tumours. They could also check your visual fields are ok too.
Thank you for your helpful reply. I have just had a CT scan on my abdomen but haven't yet had the results. I have of late been suffering with some headaches and have previously had dizzy spells. I have done some research myself and if I do have a brain tumour it definitely does point to the polycythemia being secondary to that. Which is a concern because I have always been told that my polycythemia is primary and because of the rare form which I have (apparently 1 in a million) the science and research is not available at this time to understood the cause fully. I am now wondering my a brain MRI scan has been done before bearing mind my heamo consultant is always telling me that he is baffled with my condition as venussections dont seem to work. I am yet to have the MRI scan on my head so I will wait and see what the results of that is. If you don't mind I will keep you updated.
Hi Noel, I have just found your post. I’ve had Polycythaemia - cause unknown, for over 4 years. I have no JAC2 or other mutations so have just been treated by venesection when my PCV reaches 0.45. A small meningioma has just been found incidentally on my frontal lobe. I have no significant symptoms for either Polycythaemia or brain tumour. I have an appointment with my haematologist in late April when he has agreed to discuss the possible connection with meningioma and Polycythaemia. My understanding is that meningioma tumour cells can produce EPO which is what triggers red blood cell production. I think my EPO level was normal. The brain tumour CT scan has been referred to a neurosurgery team for advice and I’m waiting for for more information. Like you I didn’t have a brain scan when the Polycythaemia was identified. I’ll post what my haematologist says about meningiomas and any connection to secondary acquired Polycythaemia.
I am JAK2+ polycythemia and had a brain tumor. I had the tumor resected on June 17 of this year. It was a rather large tumor at 1.5x1.0x1.25 inches in the right occipital lobe. The tumor type is Pilocytic Astrocytoma - rate of occurrence in adults = 1/60,000. In my case, this tumor is related to another medical condition - Neurofibromatosis Type 1. The NF1 and JAK2-PV are not directly related disorders. The NF1 mutation occurs on chromosome 17. The JAK2 mutation occurs on chromosome 9. However, both JAK2 and NF1 are kinase based disorders. The JAK2 mutation affects the JAK-STAT pathway. The NF1 mutation affects the RAS-MAPK pathway. Both can have significant adverse effects. The way the two conditions play together seems to be unknown. Simply extremely rare to have both.
I can tell you from personal experience, brain tumors are scary. At this point, you do not know what the EPO numbers are all about. I would expect they will be scanning more than just your head if they are concerned about the possibility of tumors. I have been literally scanned from head to toe in a variety of machines. I expect that at this point my insides are stained purple from the contrast and that I may create my own magnetic field from all the MRIs! (one does have to keep up a sense of humor when dealing with all this).
All I can suggest is to try to not bend yourself into a pretzel with worry until you really know what you are dealing with. It sounds like you are asymptomatic in terms of neurological issues, so even if something is there - you likely have plenty of time to get it dealt with. My tumor was found on a routine screening MRI related to the NF1. The tumor was a total surprise to everyone, especially the docs. It took specialized visual filed testing to show any effects as I was otherwise totally unaffected. So do try to be as calm as possible until you really know what your situation is.
Even if you find a brain tumor, please know it is not the end of the story. Many brain tumors are treatable. I am age 64, JAK2+PV, NF1+, hx of recent heart surgery for atrial tachycardia, and have a number of other medical issues too. I underwent an open brain procedure (craniotomy) to remove the tumor 6/17/19. I have recovered well. At 2 months out, almost all of the surgery side effects have abated and I feel fine. I had a fabulous team of specialists at Johns Hopkins Hospital who took fabulous care of me before, during, and after the surgery. The Johns Hopkins team included the Director of Neurosurgery, the Director of the NF Clinic, and the Director of the MPN Clinic. That is definitely the "A-Team."
As best you can, try not to worry too much about something that may not even be there. Please know that even if your fears are realized, there is help available. Finding the right treatment team is really important, particularly when you add an MPN to the picture. Hope you get answers soon. All the best to you.
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