Received a Call for PET/CT Scan

[Vo321]

I received a call this afternoon from the hospital, in which I was told my consultant has scheduled a PET/CT scan for next Tuesday morning. I've had several examinations in the past, such as brain mri's, lumbar puncture, neck ultrasound, sigmoidoscopy and electrocardiogram, which have been fine but never a pet/ct scan. I'm terrified about this and I've been crying, as from what I see online these scans are usually requested for detecting cancer. I see my consultant tomorrow and I hope he can explain more about this.

[Canygirl61]

Dear Vo321,

I'm sorry you're so frightened right now. It's unfortunate that your consultant didn't discuss this with you, prior to getting a call from the hospital. I too had MRIs, lumbar puncture, cat scans, and a bone marrow biopsy (!), etc.— I also had a PET scan. The PET scan was ordered to look for granulomas. I would suspect this is the case for you as well, but without knowing your history I can't say for certain. Can you phone your consultant?

Wishing you the best,

Claire

[Vo321 in reply to Canygirl61]

Hi Canygirl61. Thank you for the response. I was diagnosed with pr3 small vessel vasculitis in November last year. I had an abdominal mri around May, in which my consultant explained that it was to look at the vessels in my kidneys. I haven't had an appointment with him, since earlier than May this year. I'm assuming the PET/CT scan was arranged some time after this. I don't know if I could do that since he'll most likely be busy throughout the day.

[BronteM]

Please don’t worry, it’s not just for cancer. I was told that it shows active inflammation better than any other scan - it certainly did on me, mainly in my aorta.

It’s better than an MRI as you aren’t completely enclosed; it’s more like a CT scan. The difference is that you are injected with a tiny amount of radioactive tracer and have to wait some time for it to disperse round you before they do the scan.

So take a good book with you, and wait to see the results! The doctor in charge gave me an almost instant feed back so I didn’t have to worry about that either.

Good luck

[Vo321 in reply to BronteM]

Thanks BronteM. I saw my consultant this morning and he echoed exactly what you've written. He told me the PET/CT scan will give him a clearer picture of my organs and monitor how they are since beginning treatment. If all is well, we may reduce my Rituximab infusions from 6 month intervals to 1 year intervals.

[AmyS1]

The scan is probably being done for your vasculitis. Many consultants arrange scans to see if the vasculitis has damaged any organs.

[Vo321 in reply to AmyS1]

My consultant explained that he does this particular scan for all his patients in order to assess disease activity.

[PMRpro]

They are usually reserved for detecting cancer for some very good reasons including there are not enough devices and the tests are very expensive. However - they are also perfect for identifying vasculitis inflammation and it is one of the best tests we could be offered,

[Vo321 in reply to PMRpro]

Thank you PMRpro.

[jane1964]

Hello I had one during my diagnosis they called it a staging scan so it was just to look for disease activity.I found it was fine and pretty quick.I hope you will too.