Private PET scan - is it worth it?

Hi McAngel,

My journey has been similar to yours with the same diagnosis.  WLE and SLNB last July after MRI, CT and PET scans.  I'm not sure why I had a PET scan, I had enlarged and misshapen node in neck plus "something" on the brain scan but I cannot remember in which order I had everything now. A CT guided biopsy of neck node was inconclusive (like you it was not my mole draining area) and somewhere along the line they found I had two brain aneurysms!

As if melanoma isn't enough!  I certainly don't want to suggest that's what you have got McAngel and I do not know which scan found the aneurysms.  The three monthly check scans are  CT and MRI. The MRI for checking for brain metastases and the CT for the rest of the body so I'm not sure exactly what benefit a PET scan is?  I read somewhere that even a PET scan cannot pick up anything under 5 mm.  Is there a doctor or scanning technician who can explain to you if it's worth having one?

Take care x

Thank you for your reply AL! Really interesting to hear your journey. Glad Pembro is going well for you too! Long may it continue. And hopefully they are managing the aneurism? 

Hi McAngel, 

This "something on my brain" needs checked, so ask for an MRI.  The PET doesn't show brain mets as well as an MRI. Best wishes and hope it is benign!

Cindy

Hi McAngel, my brain aneurysms are middle sized apparently according to the neurosurgeon and he's happy to just scan them again in a year's time. However as I currently get 3 monthly CT and MRI checks it's monitored that way too.  I think I missed a detail in your post.  

A doctor cannot in this day and age say that to you and move on. They have a responsibility to investigate it so you should perhaps go back to them and ask for further identification of the  "something"

I wouldn't let it lie, it's your body and you will just worry continually about it when you already have the melanoma and forthcoming treatment to deal with hon.  Keep us informed x

Thank you. And don't worry, they are definitely 'on it'. They have booked me for a follow up MRI next month, and an a follow up CT in May to keep an eye on things.   

The good news is that my consultant expressly reassured me that it looks like nothing to worry about, and they will keep an eye on it. I'm not concerned at all at this stage. My mum told me that I was a forceps birth so no doubt it'll end up being something i've always had! 

I am a big believer in thinking positively though all these things, so will continue to do so.

Please do hear that your aneurisms are being monitored and you're well looked after. God bless the NHS - it's bloomin amazing!! 

I pleased to hear they're "on it" for you!   Not all our fantastic docs are as good as the best ones so I guess I'm always fighting the patients corner, old nurse's habit probably

Take care and good luck on your journey, let us know how you're getting on x

I hear you - im probably in the 'ignorance is bliss' camp in that case whilst you have the benefit (or hinderance perhaps!) of knowing lots of information which means you're always wondering if there is a better answer!

I am a BIG believer in advocating for myself, and definitely don't take no for answer, so totally with you in that fighting camp when it's necessary.

Best of luck to you too and will defo keep you posted :) xx