my net has moved!

Hi Dinglegirl,

Can't comment on your moving tumour but you shouldn't be worried about the scan. You don't say but it sounds like an octreotide scan of which I have had four which involve scans on two days though I was sent home overnight. Somewhat tedious lying still on the scanner bed for 20/30 mins if it is a whole body scan. Perhaps you will have a gallium scan of which I have no experience.

Hope it goes well for you. - George

Hello George, sorry I've taken so long to reply, I keep falling asleep!. I had a Gallium scan, and then it was found that I had 3 net's in my large bowel loops, and one net in my back by my Liver. The scans that I had at my local hospital did not show these net's, so a BIG surprise for me. I went to the Royal Free Hospital in Hampstead, and was told that I will have to have: Lutetium-177 DOTA-Octreotate Therapy. This is when a radio-active 'stuff' is put into you, and you have to spend the night there in a single room, with a ensuite bathroom, so that you can shower ect, it seems to me that I will feel like a 'leper'. I was told not to touch anyone as I would 'infect them!'.

The Royal Free will send me a letter telling me when I should go, The Consultant said that my net in my back had 'moved', and the above will (technical bit here) 'freeze the net, and stop it moving and growing bigger'. All sounds to me like science-fiction. When I asked if I should be worried I was told 'oh no, this happens a lot'. Have you heard of this before?.

So now I'm waiting to hear when I have to go in. I was told at the very beginning that NET'S were very rare, well, I have since found out that is not true, a lot of people have the same.

Thankyou for replying to my post.

Dinglegirl

Hi Dinglegirl,

Looks as though you have been to the right place. I guess the gallium scan was not too onerous and you are in line for one of the latest and successful treatments (sometimes called PRRT). I had a pre treatment octreotide scan to check my suitability for PRRT but the take up by my liver mets was poor so I must continue with everolimus though my main concern just now is carcinoid heart disease for which it seems I need a new (tricuspid) heart valve. My travails are in my profile if you have the time to read it.

Best wishes - George

When I was at the Royal Free Hospital, I had a blood test (in the bowels of the place), and some of the tubes with my blood in were packed in ice. This I was told by the Consultant was to see if I would be suitable (!?!) for the forthcoming radio-active scan. VERY science-fiction to me, 'we can freeze her, we can cure her!'. 

I hope that George is going to be feeling a bit better, I will be thinking of you.

Dinglegirl.

Hi dinglegirl

My cardiologist calls this a gut hormone sample which is immediately packed in ice and sent to the lab for processing before being sent away for analysis. Part of the diagnosis process and to give information on how active ones tumours are and what they are putting into your system. 

Best wishes George