Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

1st Pet scan post treatment

KMJ19
Posted by

Hi everyone, 

So i am now 14 weeks post treatment for tonsil cancer.  Hoping to return to work in the new year. 

Saw my team yesterday and am waiting for a repeat PET scan (1st being done for diagnostic reasons back in May). The ENT surgeon was reluctant to send me for a full scan but my oncologist insisted that it happen. 

Just wondered what other peoples experiences were in terms of the outcome of the 1st scan post treatment. Did people get a complete/incomplete response to treatment? I'm trying to be positive as the initial prognosis was good but I'm struggling to stay upbeat. 

TIA 

Kelly x

Beesuit
Posted by

I had an MRI at 12 weeks. I was still in a lot of pain and I rather think my oncologist suspected I might still have cancer. He showed me both sequences and where the obvious tumour was on the first scan it was completely gone in the second. My whole body PET/CT was at 16 weeks. This is now standard in Swansea as there have been too many false positives at 12. The predictive value ( ie the accuracy)  of a post treatment negative scan is nigh on 100%. But that of a positive is much less. It leads to a lot of worry for us the patients. 
My 16 week scan showed a hot spot at the initial tumour site. Both surgeon and oncologist agreed there was nothing abnormal on the scope but I had biopsies nevertheless

All were negative 

Mist people’s scans are ok. I had quite a severe reaction to radio so I wasn’t surprised. 
But here I am still alive and kicking. 
Good luck. 
I’m sure all will be well. 

KMJ19
Posted by

Hiya

Thank you so much for your reply - I hope your recovery is still going well. 

I'm just not coping well with the waiting and now the scan is imminent I'm starting to think the worse which I've managed not to do thus far. 

Best wishes

Xxx

chris2012
Posted by

Hi KMJ19, its great news you are getting a scan as a lot of people never get the offer or option to have one which i think is wrong, i think i would have rather waited for a scan than not have one as it would have given me peace of mind. Stay strong and good luck with the scan results. Take care.

                                                                          Chris x 

Its sometimes not easy but its worth it !                Click here to find out more

KMJ19
Posted by

Hi Chris  

Thank you for your reply. 

I didn't realise until I came on this forum that there was such a difference in repeat scans etc and so definitely feel better that I'm being offered one. 

Will post again once I have the results. 

Best wishes

Kelly xx