Got pet scan date, what to expect and questions

Hi Trev if you’ve not had pet ct scsn before this is what happened on mine I had one at start of treatment one at end. 
you are in your own room I wasn’t allowed phone a book or anything but some trusts do. If you can’t they will take your stuff off you. Then nurse comes in with the radioactive serum injects you  , I then laid form got 2 hour then allowed to lgo to toliet you can drink water. Taken into scanner similar to m r I but no where near as noisy.  The bed slides in snd out of scanner .I was scanned top of head to top of legs took less than 30 mins. Then came home told to avoid pregnant women snd small children for 24 hours. Results then i at m d t snd usually ready between 3-10 days friends on how busy. As to sharing with other trusts your results I couldn’t say. They are looking for the radioactive serum to attach to live cells is best way to explain. So no lymphodema is swelling so wouldn’t be classed as hot spot unless live cells do dont resf too much into anything. 
The people who read the scans know ehst they are looking for and looking at. So chill you’ve come this far 

Hazel x

Hi Trev I have been for one or two of them and no problem , There is a set time where they  allow for results times usually  printed on the paperwork. They really want to get every possible  test done before they do a treatment plan. I have had swollen lymph nodes on my neck getting bigger just as I started treatment so I dont know what thats about doctor ok with it over the phone . All test results are shared I believe. Try not to worry , I know easier said than done. All The Best Min 

Thanks both, i really really appreciate the rundown of what happens, although if they try to take my sanitiser off me there will be trouble :-)

I know i need to stop worrying, and before diagnosis i was not a worrier at all! This seems to have changed me and now every neck ache or back ache is analysed far too much

I know i need to snap out of it and thanks again.

Hi Trev....try to relax. Lymphodema can be really troubling and can certainly cause the neck symptoms you are describing. The swelling will be greatly helped if you get down to those exrecises. The longer it's left the harder it becomes so its worth being persistent.

The science behind the PET/CT is that active cancer uses more energy than normal resting tissue. So they give radioactive glucose solution by injection. It's only a small amount and it doesn't hurt (apart from the jab, of course). You need to get this round your body so have to be well hydrated and you'll get a litre of water to drink while you wait the hour or so for your glucose to get into all your cells. They let you go to the loo.

The scan is head to mid thigh and your team will be made aware of any anomalies so if there is anything anywhere else they will know and so will you.

I was allowed to take a book in to read but Hazel wasn't. These waiting rooms can be cool so I suggest you make sure you have something warm to wear. You have to rest quietly. You are isolated behind feet of lead so your phone might not work unless they have wifi in the unit.

The radioactive glucose breaks down releasing radiation which is picked up by your second scan. As Hazel has said, the scanner just looks like a double CT scanning doughnut. You get a normal CT, then a PET scan (so two passes through the machine) and the two images are superimposed for the radiologists to read. Results are usually available three working days after your scan but when you get the results depends on when your MDT meets to discuss them.

You should get a leaflet from the scanning  team because some preparation is crucial. Mine came in the post.

You aren't allowed to eat anything after midnight, if I recall and they will ask you not to have any rigorous exercise before the scan otherwise your muscles all show up as hotspots.No cups of tea in the morning. 

The whole thing takes about an hour and a half.

It's something to look forward too because it marks a definite beginning of the end and a return to normality.

The PET scan is as the others have said, so nothing to add apart from it's the MRI you need to steel yourself for.

The neck I still get neck aches/throbbing after 5 years and have found it's more so when I get stressed and when it happens I try to relax as much as I can, it used to be very bad until I worked out what was causing it so now when it starts I just try to shut out of my mind what is causing it, not easy when you are going for a new treatment but none of them are as bad as you might be expecting.

Hi Trev

I think you have most of the answers already.  You are probably having a combined CT and PET scan as this is the most common scanner.  Both will look at most of the body.  I find it relatively easy to doze off during the scan 

The science has been well explained although I will say that the PET scan will often pick up other infections as those infected cells will also tend to take up the radioactivity - I had that on my last scan, but the MDT review (before I saw the consultant) correctly identified it as an infection.

There should not be an issue with your other consultant seeing the PET/CT scans if it is appropriate.  You may need to let them know that you have had one and where it was done so they can have the report and images sent through.  Remember that it is your scan so you can do what you want with it, within reason!

Thanks for all the replies guys, i appreciate it, yes i read up a little on the procedure and it makes sense that areas with high metabolism will take up the radioactive sugar the most..i was just worried inflammation from swelling would show up but you have put my mind at rest.

Also reassuring to hear that others get a throbbing neck! although i would not wish it on others if that makes sense!

I am assuming that i will have to undress and wear a gown for this? did people have to do that before the injection? or just before the scan? I am mostly thinking about keeping my sanitiser as long as possible :)

The trust emailed a leaflet this morning- It says on the emailed document that i should bring an audiobook as i wont be allowed to read in the injection room...its a bit odd that they allow audiobooks (so presumably phones) but not kindles, but its no big deal.

If i ever get to see my other consultant (the appointment has been cancelled 3 times!) i will definitely let him know about the pet scan, thanks.

TrevW said:

I am assuming that i will have to undress and wear a gown for this

I didn't. Just don't wear anything with metal in it. Tracksuit bottoms are fine 

I wore a crop top so that I wouldn't have to take my bra off....but I don't suppose you'll have that problem ;)

Inflammation does show up as hotspots. This is where the radiologists skill comes.

By the way, Lymphodema is not inflammation, it's a build up of fluid that the lymph nodes usually deal with

Ha - before diagnosis i was creeping up towards 15 stone so  a bra may have been useful! but not so much nowadays

Brill advise thanks, ill avoid any metal for sure.

Trev

I had a full body pet ct scan on the 10th December, she said the results would be back later that day or the next morning but then the docs needs to have a look at it and make decisions etc, my follow up appoinment was on the 23rd December so 13 days till I got the results, felt like forever waiting!