[CharlotteParticipant]

Hi,

In response to something posted on another thread, I'm now worrying that I should insist on being given an MRI as follow-up, even though my bloods have been fine since treatment (radiotherapy and Dexamethasone) for plasmacytoma 2.5 years ago, I've had no visible proteins since treatment and there's no indication that it has progressed to MM.

Whenever I've been for my 3-monthly checkup and have been concerned about a specific ache, they have sent me straight off for an X-ray, and it's always been fine. But I've had no MRI since a week or so before the treatment finished. As far as I can remember I had about 3 before and during the treatment, but only of my spine. They also did about 14 X-rays of the rest of all my long bones, and took bone marrow from my hip.

I'm worried that, if this (no MRI) is their standard procedure, I would effectively be making a fuss and demanding (expensive) special treatment when all the indications are that I am fine, and they will think I'm a dreadful hypochondriac. On the other hand, I worry that it could be lurking undiscovered; they say that, because the proteins were clearly there before, they will "probably" show up again if it comes back. But they can't guarantee it.

Do other people have regular MRIs as part of their monitoring? I'm guessing though that this may be different for patients who actually have MM…

Charlotte

[jmsmythParticipant]

Hi Charlotte

I can give you Franks experience. He was diagnosed in 2006 with Smouldering MM in Sept 2006 and was monitored every 3 months. Bloods and everything were fine and the he took a pain In his side. He had it for 18 months and was sent for an MRI which didn't show up anything Pain went on and it was decided to have a PET scan (I think that's what it was) when I asked what the difference was I was told that an MRI was looking at a photograph through Vaseline and the PET scan was looking through a glass – clear as crystal!!! They found he had two lesions on his ribs and was referred to radio therapy. The consultant said radio therapy not necessary and he started CDT and after a couple of months pain had gone. Charlotte you know your own body and if you have any concern I would suggest that you ask for the next scan up from the MRI. I remember Eve (a member of forum) saying that with this bl**dy disease you Learn to be assertive and I can relate to this. This in your illness and you have to be In Control. I hope you get sorted and do please keep us informed

Love Jean x

[MothasParticipant]

Hi Charlotte,

Please don't take my case history as something that's common for people with plasmacytoma, this disease develops differently for everyone.

I feel bad that I've unsettled you.

I'm sure you are fine but you are certainly not 'making a fuss'. You have had treatment for cancer not a few sniffles. I'm sure your consultant will be very supportive.

Your GP can also refer you and is obliged to. I try to keep my GP in the loop with all my treatments with cancer referrals – they don't mess around. With your history I can't see how you'd be refused.

Let us know how you get on, but I'm sure you'll be supported in your requests.

tom

[Pilgrim01Participant]

Hello Charlotte,

I am three months post SCT and have just had a full spinal MRI. It seems to be the de facto way of establishing the extent of any damage to the bones and a key part in determining whether existing treatment is working. I would push for an MRI if you can. Good luck & best wishes.

Tim

[VickiParticipant]

Hi Charlotte,

I agree with the others, if you have any concerns, ask for a pet scan if that's what's required. They can only say no, and if they do ask them to explain in full why one is not necessary! I am sure everything is ok but to reassure yourself it's worth it. Also with regard to blood tests I reckon they are pretty good at picking things up in minute detail.

Best of luck 🙂

Vicki

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