Husband with Hpv+ scc of tonsil

Hi SLK, welcome but sorry to see you here. My husband took a very long time to heal post treatment. Click on my name to see my profile, He had his pet scan at 16 weeks as our oncologist thought  12 weeks was giving way too many false readings. We were amazed when we were told it showed no evidence of cancer as he was still so poorly.

We’re now 9 months post treatment completion and are due for our 3rd ENT appt Monday. He’s  eating much better but it took way longer for everything to heal than we expected. Every appt is a worry but you do learn to live with it,

If you have any further questions please feel free to ask, there will always be somebody here that is willing to help in anyway they can.

Hugs Debbie xx

Hi my pet ct scan was week 18 I knew that from day 1 my oncologist likes to give tone to heal. It’s not uncommon for residual inflammation to show up. They tend to re scan if that’s the case. It’s extremely rare for treatment to fail this early on ur all takes time for everything to heal. Hpv driven tumours have a great curative rate hold on to that 

Ulcers again not uncommon I still get them at 7 years post treatment. Again our mouths are sensitive it’s early days fir your hubby 

 hugs 

Hazel. 

Thanks so much Debbie, really appreciate it. Wonderful to hear your husband’s doing so well. Xxx

Thank you Hazel, that’s really helpful information. I think I’m just in full anxiety mode and fearing bad news. 

my husband is quite down and is quite frustrated there isn’t overall improvement in swallowing but I don’t think either of us were prepared for how hard it was going to be for him. 

No problem. My oncologist did say he was going to cure me but also apologised for saying he would make me iller than I had ever been and recovery was a marathon not a sprint. It can’t be rushed in return he’s give me a great 7 years and hopefully many more. Get you hubby to tj read my blog it might help him see how I progressed. 

Hazel xx

RadioactiveRaz said:

No problem. My oncologist did say he was going to cure me but also apologised for saying he would make me iller than I had ever been and recovery was a marathon not a sprint.

The can have a weird turn of phrase these consultants. Mine told me he was going really fry the back of my throat and that I would need a nasogastric tube sooner or later. 

SLK said:

he is really struggling with the constant difficulty swallowing and sores on his tongue. He has just had his PET scan prior to our first meet with the oncologist next week but I’m really anxious as while the large lump in his neck has shrunk hugely you can still feel one small lump on the same side. I wondered if this is pretty normal or a sign treatment has not been successful. 

Recovery is really slow. A step at a time. Even lymph nodes can take time. 

So here with an update. We just saw the oncologist who showed us the results of the PET scan. No cancer in the lymphs anymore but scan showed uptake in the tonsil area where he had his left tonsil removed. He isn’t sure if this is still cancer or it could be a sore patch that can sometimes take up colour. 

So he wants an MRI and another PET and back to him in 6 weeks. 

my emotions are all over the place and now worried he didn’t remove all the cancer when he removed the tonsil. And have to wait again now for those results. 

Hi good news nothing in lymph nodes re the uptake in his tonsil area in around 60% of cases residual avidity still shows from treatment . My pet scan wasn’t done until week 18 after treatment finished. Often if done early it still shows activity. Saying try not to worry won’t stop you worrying but it’s not unknown am sure Dani will pop along she still had activity showing now she’s almost 7  years post treatment.
It’s extremely far for our treatments to fail at the first hurdle.  
How far  post treatment was his  pet scan ? Oncologists would ideally like to leave 6 months but they understand us as patients wouldn’t want that. 

Everything x for next scans you’ll worry but please try not too

Hazel x

SLK said:

uptake in the tonsil area where he had his left tonsil removed. He isn’t sure if this is still cancer or it could be a sore patch that can sometimes take up colour. 

So he wants an MRI and another PET and back to him in 6 weeks. 

my emotions are all over the place and now worried he didn’t remove all the cancer when he removed the tonsil. And have to wait again now for those results. 

Try to relax. Failure of treatment is exceedingly rare. The exact same thing happened to me. I had cancer at the base of my tongue and a hotspot on PET at 16 weeks. My oncologist, bless him, knew how dismayed I was and arranged a biopsy the following week rather than waiting for a follow up scan which is what has happened to you. 
This is really common and it’s because PET can’t tell the difference between acute inflammation and cancer. 
Many oncologists would much prefer to scan at six months to avoid this but there has to be some sort of compromise with delay causing patient stress

Mine was cancer free. I’m sure your husbands will be too 

RadioactiveRaz said:

Oncologists would ideally like to leave 6 months

You beat me to it.