Post treatment scan timing?

Hi Bluebird. My understanding is that 12 weeks is the norm for a post-radio (or chemoradio) scan, but of course we are all individuals and therefore your team may have a good reason for wanting an 8 week scan. You could ask them why, or trust that they have a good reason. Different units have different scan regimes - it used to be MRI only, then some did MRI followed by PET and some now some do PET only. My big advice is this - you need to be ready for a PET scan to be needed after the MRI. I was told this occurs in 60% of cases by my Oncologist (only months later when I asked how often this happens). It’s truly awful waiting for a second scan when you have already waited so long to find out if treatment has worked. So I tell you this so you can be prepared. If you don’t need the PET as well - brilliant, celebrate. If you do need a second scan, you will be ready for this information, not shocked that you have even longer to wait and worry. It’s not an easy time, so plan to keep busy in the period between scan and result and dwell on the likelihood of a good result, as this is more likely than the other option.

Best wishes

Hilary

Hi Bluebird

PET/CTs have traditionally been carried out at 12 weeks in most places. The scan has a really good correlation with treatment success if it comes back negative. However, if it comes back positive (i.e. a hotspot) the correlation is much worse. i.e. a false positive. This leads to a lot of unnecessary worry. Some oncologists are now doing these scans at 16 weeks to avoid this.

Some centres rely solely on an MRI, some do both. It's up to hospital protocol

I had an MRI at 12 weeks because I was still in pain and my oncologist was surprised I was still on opiates. It came back complete response to treatment. I had a look at both pre and post treatment scans myself and the difference between the same sequence was remarkable. I would have been happy leaving it there but a PET/CT was ordered for 16 weeks.

To my utter dismay the area where the tumour was treated was avid so I had to have a biopsy. To my mind I felt well and as I had so much pain and a slow recovery I was convinced that the hot spot was just healing still. I nearly refused the biopsy. 

It all came back clear but set me back quite a bit. The surgeon couldn't see anything abnormal so took lots of samples.

An early MRI will assure you that all is well so I would go for it. I'm sure your husband will be lined up for a PET/CT as well

Good luck

Hi Hilary

thank you for that it’s really helpful to hear all that. I think I will ask them as they haven’t so far been the most joined up or organised service, not sure anyone is really overseeing what’s going on at times! Unless as you say they have a specific reason for an 8 wk scan, good tip re the Pet scan, will be prepared fir that now! Thanks again!

L

Hi Hellebore

It's a timely reminder that not all hospitals traditionally had access to PET/CT

Swansea till recently used MRI only but with the availability of PET/CT that's what they tend to use

Hi Beesuit

Thank you , that’s really helpful to hear your experience and especially that you are clear of it now. It must have been worrying waiting fir those results. 

As you say maybe an early scan would be reassuring. They said they don’t plan to do a Pet scan unless absolutely indicated as their waiting list is very long fir them. But can ask for one if the oncologist thinks it’s required. I have read about the issue of false positive pet scans and the issues this can cause, so I get that they are not inflallable. 

Someone said they had been told the radiotherapy carries on working for 3 months after treatment, I wondered if that was why they tend to do a 12 week scan maybe?

thanks again really helpful to get your views.

L

Hi Beesuit

yes my area seems to have limited access from the impression I got when I asked. So not used routinely for this kind of cancer as in some areas. When I talked about the nice guidance on this, they said well it’s only guidance not a requirement. Whereas Oxford said they would definitely have done a 12 week pet scan. It’s a difficult one as it seems like it’s a bit of a post code lottery situation. 

L

So much varies doesn’t it? 

Its not good not having all the team under the same health board either. 

Scans were always done at 12 weeks then my consultant went away to a head neck cancer seminar and bounced back  with lots of new ideas and this was one of them. 

HPV is his thing so he got his way. 

Let us know how he gets on

Not good NOT having the team together is what I meant