Hello ... another Medullary Thyroid Cancer patient here!

Hi Nashman,

I've been very lucky with all the places I've been treated - had the initial diagnosis and surgery at St James' in Leeds. It took 6 months from me discovering the lump, seeing GP a couple of times, seeing Harrogate consultants a couple of times, then surgery.

After surgery, I moved to Cambridge to be close to family and friends. For the follow-ups and genetic tests I was with Addenbrookes - genetic tests, I think, took 6 weeks.

I'm now living in Cornwall, near my mother, since Covid. Royal Cornwall have been equally good. All the hospitals have set up and performed regular blood tests, with me getting the results about 1-2 weeks later.

Sorry to hear about your disillusionment with your London treatment. I imagine it's because of a denser population with many more delays to many more people since Covid, Brexit (fewer EU staff), austerity (financial cuts) ...

Hi JMer - quick question, my consultant has been very reluctant to do PET scan due radiation impact, has your consultant raised this?  At the moment I am just doing US and MRI scans, both have no radiation

Hi JMer,

Thank you for your reply.  I think you are right about London, I think the staff at St John and St Elizabeth hospital in St John's Wood London seem to have no idea what calcitonin test is, as I had to repeat it several times just to get one reading.  I then resorted to do it under NHS and they were more reliable and you get results in your NHS app in a couple of weeks.  

Have you tried any alternative medicines to try and control your cancer?  I have been recommended a few things like broccoli sprouts, Turkey Tail mushroom, Red onion juice (this is very difficult to drink).  I am trying a couple of these things.

Your setup in Cornwall looks really nice, good luck with your ongoing treatment there and hopefully your calcitonin will drop quite quickly

All the best

Hi Nashman,
I was given a standard blurb about radiation, but nothing that frightened me. This was an initial scan - I don't think they'll give me another one until my calcitonin levels increase dramatically.

Hi,
I've not tried alternative medicine for MTC but am taking mushroom powders for other reasons. I'll look into the Turkey Tail, thanks :-)