I’m being bounced between haematology and neurology. I’ve had MCL since 2020 and successfully had 8 x rituximab and was in remission for approx 2 years. Now officially in relapse although I have some awful symptoms, the nodes aren’t big enough to hit with next stage treatment, but I’m suffering other issues with my head. I have EXACTLY all symptoms of Chordoma but I’ve discovered specialists need to interpret the various scans. How do I insist without seeming disrespectful that the scans are seen by another clinician?
Hi again Jules3rdDan as you may remember I have been on my CTCL and PTCL-NOS journey for over 25 years and my GP and indeed my local Heamatology team (Inverness) and my SCT team (Glasgow) often said that there are times that the ‘patient knows better’
But I was fortunate in that my local Heamatology Team and SCT team would put my case (unsolicited) out for peer review at other centres of excellence and indeed I was sent to see other consultants…..
What do you do?……. you just ask for a second opinion……. Your body your right…..
This link Getting a Second Opinion will explain the process for you. (Macmillan)
