Hi!! I'm new to this forum but wanted to say already it is proving to be so very helpful! Thank you! I'm 34 and a few months ago dx scc to the left tonsil stage 1 N0M0. 7 weeks of daily rads and now 3.5 months later I had my rescan for the Pet/ct and came back showing activity in the original site suv 3.5 baseline was 8.9. My oncologist has said more than likely to be inflammation but I'm so bloody scared and was looking to see if anyone ad any similar results. I haect waits a whole 8 weeks before I get rescanned. Xx

Welcome to OCF, Shell! So sorry you are going thru a recurrence scare! Unfortunately many of us have been thru this also and it can be a very horrible experience.

PET scans are known to cause false positives. This is why doctors usually wait for at least 3 months after rads to do the scan. Its happened to me too and it seemed to take forever before they could recheck me. Its not easy but try your very best to still go about your life. When the "what if's" creep into the back of your mind allow yourself only a few minutes to go there then change the channel. This will take alot of practice. Try your very best to go out and live your life without letting cancer steal your time from you.

Wishing you all the best and hopefully it turns out to be nothing more than residual inflammation.

Welcome! It happened to me too with the PET/CT scan, even at testing at 5 months post treatment, and needed an MRI with contrast, which was also inconclusive due to dental filling scatter, and then had an FNAB. Tonsils are known to highly reactive due to the high lymphatic activity there, as well as others. You had stage 1, early stage, was HPV positive, and both respond well to treatment, so that is very good. Try not to worry, which is easier said then done. Happy New Year, and good luck with the next scan.

Shell

Welcome to OCF. I've been thinking that a T-Shirt that read:
[quote]My doctor ordered a PETSCAN, and all I got was a false positive[/quote] might be a big seller based on our collective experience. A Petscan is incapable of distinguishing between SUV from normal tissue recovering, or inflammation from a cold, or muscle activity after heavy exercise or if you just chewed gum and SUV from cancer. All it does is measure sugar uptake. That's why standard pre Petscan preparation warns you to eat a very low carbohydrate diet, don't exercise, don't chew gum etc for 24 hours before a petscan. Even then, for oral cancer, the majority of Petscans give false readings.
I refuse to get Petscans anymore since an MRI is much more reliable and does not give false positives.
Hang in there, and ask maybe if they could do an MRI sooner rather than later.
Charm ,

I would buy that shirt

Thanks Christine for your reply and your help with my post, I love that, channel changed. I didnt know about not eating carbs! They just told me to drink at least aclitre of water in the hour before and not strenuous excersize the day before. It was a ct pet scan. Hmmmm whats a mri?
Paul gosh still at five months you must have felt like you waited for eternity.
Charm Id buy that shirt too ha.
I put it all into perspective and then I am ok. I have three young children and that's where I start to come undone. I think it's through pure terror that I think the what ifs. No one Should have to go through this.

Hi Shell,
We went through this as well at 4 months out. We freaked out, but then a follow up MRI showed it was just inflammation. The PET 6 months later was clear. If you can, request the MRI. It will bring peace to the situation.
Kathy

Thanks Kathy. That's very reassuring. I guess my soreness from radiation has felt like its lasted forever and it gets me thinking what if I'm in that percent that it's not all gone, what next? I get strange symptoms in my mouth and really never know if its normal or not. Arghhhhh lol Anyway I'm really thinking a bit to far ahead. Im sure it'll all be ok. So many brave people on here, I really feel lucky to have found somewhere to go to apart from google and that's just to scary when you read info on there! Xx

Shell, all kinds of stuff goes on during and especially after radiation that we can never explain. I say especially after because we're usually too zonked out during to really take note of anything.

But your situation sounds a bit like mine, and my best guess is the same as the others have suggested. Between the stage 1 and the fact that you're HPV+ I too have a feeling that it was indeed a false positive.

So chin up and try not to worry. You and I are really among the lucky ones here, as I remind myself every day. And as I think I wrote in another post, feel free to come in here and just vent anytime you need it. That's what we're here for!

My best thoughts flowing across the big pond to you.

Thanks heaps David its always reassuring to hear. I certainly count my lucky stars. I have read some amazing and inspirational stories on here, everyone is so brave and it's really great to have others who understand to talk to.