Not good news

Went to see the haemo last Wednesday. Platelets 977. He said carry on with the aspirin and ill see you in 3 months.

On Thursday i had to see my GP for the results of a scan I'd had for a lump in my abdomen. The lump turned out to be a cyst, however the scan had revealed a mass on my left kidney . My GP had to tell me to prepare for the fact that it was probably cancer. To say I was devastated is an understatement. I was due to attend the MPN patients forum in Llandudno the day after. I couldn't think straight let alone drive so sadly I missed it. I have been to the hospital and have further scans booked And an appointment with the urology doc after.

I was only diagnosed in June with ET and I'm wondering if I have secondary ET due to the suspected cancer in the kidney ? Ive never had a BMB

Hopefully I'll get some answers down the road.

6 Replies

  • Hi

    I am really sorry to hear of your situation, it must be incredibly worrying. I don't know if this would cause a secondary form of ET but I hope you get some answers soon.

    I hope you get the results you want from your tests, but if you don't hopefully they can get you on the right treatment path. One thing I would say is make sure those handling your ET and those your Kidney situation keep in touch with each other.

    All the best


  • Hi Ian, I'm very sorry to hear of this news, and I can totally understand your concerns and also your questioning that your ET diagnosis maybe 'reactive.'I know it's also easier said than done - but try to remain calm until you know what your dealing with. I would also agree with Paul that communication between the medical professionals is vital and make sure your own voice is heard. I truly hope you get the answers to your worries soon.

    Keep us updated....we're all here to support you.


  • Very sorry about your diagnosis. As the others have said its vital your various doctors liaise with each other. Hopefully you will get the right treatment quickly.

    Best wishes


  • Hi Ian, sorry to hear this news, keep us updated, we are all here for you. Maz x x x

  • Hi - What worrying news. It is hard as you say to think straight when you get news like that out of the blue. I don't know enough to comment on secondary ET. (I have ET, and have had it for just over a year now, I'm on hydroxy). The one thing I did want to say is like Paul has mentioned - to make sure all the Drs communicate with each other. I will often take anything I have in the way of print out or results on a visit to a different dr, as I find even in this digital age, they don't seem to pass on results amongst themselves. My best example of this is a hematologist didn't realise I had already had a bone marrow biopsy, and I think wasn't sure whether to believe me, fortunately by chance I'd brought the results along with me that then got photocopied and put in the file. All good wishes, do keep in touch. Jean

  • Seems like others here have had success with Hydroxyurea lowering counts along with the aspirin. 977 sounds a little high to me. 🙏🏼

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