ET

I was dx with ET last year and had.my spleen checked at the time. Since then I asked my consultant if he would check my spleen and he answered we don't do that here? Now if they don't do it at the clinic where else? Why do I have to ask for one is it not automatic each visit which is every three months? So it is over a year now since it was checked? Am I missing something?

3 Replies

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  • Hi Klys

    I have had my spleen checked less than a handful of times over the last 20+ years since diagnosis with ET. It's a job or an ultrasound department, who will then report to your heam.

    I wouldn't worry to much on this. For me it is an ongoing monitoring process, currently once every 3 years. My spleen has enlarged, but this has been controlled successfuly with HC. The utrasound itself is nothing to worry about.

    good luck

    David

  • Hi, my consultant checks my spleen regularly by physical examination, at least once a month. I've also had 3 CT scans over the past 4.5 years. I guess this just illustrates how consultants vary. If yours is not an MPN specialist maybe try and find one in your area. Best wishes, Frances.

  • Hey Klys ... :)

    I was originally diagnosed ET, and later MF. My ET was only in early May 2016, and since that time, I have had three (3) ultrasounds (US), and one CT scan for my spleen, which was only ever mildly enlarged (at this juncture - 12.5cm bcm). However, my latest US showed a very minor reduction, since I have been on Jakafi.

    My advice is not unlike the previous post of Frances above, find a GP who will authorise your US referral, (AS OFTEN AS YOU WANT TO KNOW THE RESULTS!).

    This is after all, a very serious condition that affects you, your health, body and longevity.

    Having a US is a mostly a painless experience (usually - just a tad cold sensation from the apparatus is all) :)

    Best wishes

    Steve

    (Sydney)

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