Pet scan

Hi

T2N1M0 HPV16+ tonsil cancer

I was misdiagnosed twice....took nearly 2 years to be referred to ENT....the worry was that the cancer had migrated elsewhere....did not have PET/CT scan until treatment had finished....all clear.

Peter

I had pet ct scan  prior to treatment starting it’s not unusual mine was  from head down to hip. Unknown primary’s aren’t that uncommon often if can mean the primary burnt itself away they will do radiotherapy to both sides of neck. 
I was a fit 61 when diagnosed  neatly 7 years dig still pretty fit spent 8 hours at allotment yesterday. 
Stick with us all happy to help. Hpv driven tumours do respond well to treatment. 
Hazel 

Hi.

Yes. Like you I had a biopsy on a neck lump which showed HPV SCC but they couldn’t identify the primary in any MRI/CT scans or a full body PET scan.

The primary was only identified post surgery and was in my tonsil - too small to be picked up in the scans. Even though it has spread to my lymph nodes surgery removed it with enough margins that I didn’t need follow up radiotherapy. 

I know it’s easy to say but try not to worry about what it might be and wait until your team have all the information they need. 

Hi sorry to jump on this thread but did you have robotic surgery. its been offered to me or radiotherapy. Been trying to find someone who's had it done.

Lindielou said:

but did you have robotic surgery

Have look at some of the posts HERE

There are people on the PATHOS trial who have TORS

Thank you all so much for your replies ! I feel so much more reassured. I've read your blogs, etc., and know I'm in for a rough ride, but thankfully, I'm a tough old bird and tend not to worry about myself. If it was my husband or another family member, I'd be out of my mind. I'd much rather be the one it's happening to, if that makes sense. Thanks again, will keep you all updated. Pet scan is a week today.

Yes. I was offered the option of surgery or radiotherapy. The surgery was bilateral tonsillectomy and tongue base by TORS. I chose surgery.

I was in hospital 3 days and swallowing was very hard for about 2 weeks. I felt well enough to go back to work after a month. 

if you can, ask what the chances are of NOT needing radiotherapy after the surgery. I have been lucky and not needed further treatment. Under these circumstances it feels like I have got off lightly compared to many on here. 

Ask anything you like - they gave me the option via phone a couple of days before I was booked in for surgery. It was a lot to think about. 

Yes I had a PET scan, which revealed that mine was on the tonsil. Like you I was really worried that they would tell me it was in my lung but that was all clear. I’m in week 3 of treatment.

Good luck and welcome to the community! 
Bridget

HPV Tonsil & neck

bridgetsblog.uk/.../

Thank you, Scorpio ! I hope your treatment goes well.

Hi all, hope you're all doing well. Just a little update. At the moment I'm at Aintree hospital, waiting to go down to theatre for neck dissection and laser surgery on base of tongue (tonsil area was OK after all). Surgeon, anesthetist and staff are lovely and I'm feeling extremely chilled about it all. Hope I still will when they wake me up later lol.  I feel so fit and well, though, perhaps I've just forgotten what it feels like to feel lousy. I came in and had biopsies under GA two weeks ago and felt fine. Fingers crossed, here we go......