Pet results anguish

Hi Angela,

Welcome.  We are a friendly and supportive group.  Glad you have found us.

14 weeks is early on in recovery and I would suspect that the pain you are experiencing is part of the healing going on.  I am a year out of CRT and still have discomfort where the biggest hit from the RT was.  I don't need pain relief for it, but it just reminds me of the trauma I went through.

As to the pain affecting the PET scan results.  It should not directly.  There may be some hot spots on your scan as a result of the healing still going on or as a result of some infection, but the oncologists are great a recognising such artifacts and should put your mind at rest.  Many of us have had the same fears as you and it is perfectly normal to feel concerned.  Hold on to the fact that for all the trauma we suffer the cure rate is around 90%.  Waiting for that confirmation is absolute hell, but we will be able to support and reassure you through this. Stay with us.

Bless you for getting back to me so quickly. So much appreciated and so very kind. Thank you. I needed to hear that from someone who has been through the same. All I seem to do is cry at the moment. Thank you for your support.

Hi Angela. 
Try not to worry trust in the treatment head and neck cancers respond extremely  well to treatment. Peters given a great explanation.

I’m quite lucky that I don’t worry I have an attitude that if there’s nothing that I can do about it why worry about it? Once you’ve got your results try and keep that attitude. It will get easier as time goes on. I’m now seven years close chemo radiotherapy for tonsil cancer with seven affected lymph nodes and I’m still here living in a great life.stick with us we’re all happy to help. 

hugs Hazel x

Thank you so much xx

Hi Angela, some very helpful advise you will get on this site from some wonderful people, I am glad I found this forum,it gives me great comfort .Having to watch my husband going through what you guys are going through,is heart breaking, he is 10wks post treatment, and still in some pain,especially the throat, we had the same worries about PET/CT scan results, but as been mentioned, try not to worry too much, trust in your medical team. Hope you have a strong support group at home,they will help you through.Best wishes and hugs .xx

Hi Angela

T2N1M0 HPV16+ Tonsil Cancer

I finished CRT in June 2023 .....PET/CT scan in Sept 2023...still had pain issues ...scan was all clear....I had a hernia repair op the same month...intubation damaged my throat leading to another 4 weeks of pain...meds controlled it...our mouths and throats took a lot of punishment....very vulnerable to latent damage...I still get little niggles 21 months post treatment.

Hi Angela. I had a PET/CT at 16 weeks and that showed avidity that needed investigating, so it does happen but treatment failure is rare and my biopsy a few weeks later showed no cancer. 

Hi Angela, welcome to the forums (you've come to a great place) and congratulations on getting through your treatment.

The pain itself, I believe, wouldn't impact on your PET results. My post treatment CT scan (12 weeks) gave them enough concern for them to decide I also needed a PET which took place 2-3 weeks after my initial scan results (so round about 16 weeks post treatment). 

It actually showed up "activity" in my chest, although they were confident that this wasn't cancer but down to enlarged nodes as a result of all the previous radiotherapy. Fortunately a further follow-up scan proved that to be the case. PET scans are unable to ascertain the difference between this kind of activity and actual cancer.

Much easier said than done, but try not to worry too much at this stage. Lots of pain is still perfectly normal at your stage of the journey, and from experience even if something does show on the PET it doesn't necessarily mean bad news.

Your team will keep you right, and supported, and you will also find lots of support on here. Keep us all posted :)

Dani, not sure if you can answer this but Paul hasn't had PET/CT scan apart from a CT scan on his chest after we found out he had tonsil cancer etc and he's due to have his 3 month MRI scan beginning of April etc - I'm just wondering why he's having MRI and not a PET/CT ‍♀️

LadyAH said:

I'm just wondering why he's having MRI and not a PET/CT

Hi. 
Not all centres offer PET though most nowadays do. I was treated at Swansea and for many years they didn’t have access to PET so patients had MRI. I guess that if the chances of any distant spread are negligible not having a PET isn’t an issue. It’s a question for his oncologist. 
Can you remind me what Paul’s staging was