Simon is now 3 weeks post treatment. The external radiation burns have healed and his ENT has scoped down his throat and said it looks very good.

He has asked the ENT about the scanning schedule, and she has said a PET scan 12 weeks after rads finish, and there-on just visual/scope down the throat examination by her. What if a tumour is growing inside tissue where she can't see it? How do things like that get picked up or do they only get picked up once they start to bulge? She also said you'll know if you've got a recurrance when you get discomfort.

She says the PET will only pick up something at least 1 cm and that the scans are damaging anyway.

I notice on many people's signature they seem to have annual PET scans. Can anyone advise me?

Same same with my Alex.

I was beside myself thinking that they weren't treating Alex properly and like you, wondered how could they possibly see a recurrence in time? So in my typical arrogant (I prefer the term pro-active) fashion I went looking for the research to bash the oncologists over the head with and discovered that yes indeed, scan is recommended within 6 months of treatment (ours was 12 weeks which seems to be the norm in our neck of the woods) and then "as indicated based on signs/symptoms; not routinely recommended for asymptomatic patients". This is quoted from the US NCCN guidelines - Head and Neck (oropharyngeal section and which links to follow up (FOLL-A). Guidelines are on this site but I can never find them so have my own link that I refer to all the time (sorry Brian).

Most disappointed and live in hope that the guidelines will one day change to allow Alex to have a PET after his Weeties every day (assuming that one day he will actually be able to eat Weeties ).

But seriously, I suppose there are so many things going on in the body, that if you had a PET every year, you would eventually turn up with a positive associated with infection, scar tissue or whatever which would be just as useful as tits on a bull.

samkl, remember that the physical examination by a skilled ENT is a pretty powerful test in and of itself. I'm like Karen, though, and wish there was the post Weeties (or in our case, oatmeal) daily check.

I've just read through the NCCN follow-up recommendations and it says

"Post treatment baseline imaging of primary (and neck if treated) recommended within 6 mo of treatment*. Further reimaging as indicated based on signs/symptoms; not routinely recommended for asymptomatic patients."

and also later clarifies "For cancer of the orapharynx ..... imaging recommended for T3-4 and N2-3 disease only."
Why do they recommend this course of (non)action. Is it just because of the concern with false positives or excessive radiation? If so, why don't they do fine-needle aspirations and biopsies of the treatment areas? Or do they assume all is oK there and the potential problem is more distant metastases?

I believe that it's balancing the risk of the additional PET/CT radiation vs. the benefit of using it to check up on the more advanced (by T or N) cancer.

When my husband was initally checked out for a mystery earache, the CT scan showed a swollen node, but no tumor. His doctor at the HMO we belong too did a FNA of his swollen node - fluid came out, but it was clear for cancer and infection. The needle didn't hit the cancerous part. He also tried to do an in office throat biopsy - couldn't because of his gag reflex. If he had, that would have been negative too, because the cancer was not at the surface. Thank heavens, he didn't like the look of it, and escalated to the team at MetroHealth - otherwise he could have had 2 biopsies that showed nothing and stage III or IV cancer (depending on if a second node was involved or just signaling). Thats a long story, but what it boils down to is that I've got a lot of respect for a doctor's hands, mind and intuition - as well as for advanced diagnostic technology.

Forgot about the doctor's eyes and ear - a good one will look at the whole patient, and listen carefully to him or her. If the patient doesn't look too perky, or sounds unusually negative, there may be a clue that something is amiss. I like the thought of clear scans, but I am also happy when the doctor is satisfied at the end of the exam.

It's hard to believe Simon is now 6 months out of treatment, and tomorrow is his 6 month check. I'm still a bit concerned that the check is not a scan, although I know that is within the current guidelines.

I have noticed again how many signatures have several PET results, and I must admit from a lay person's perspective I'd be a lot happier if he was scanned. I let you know how he goes.
Love to you all

I am hoping for a great result for Simons 6 month check Linda.
I never had a scan of any kind but looking at your signature he did have a clear scan on the 1st February.
Love to you both,
Gabriele

Fingers crossed for you guys... Good luck!

Thanks girls.

Hi Samkl

Like you, I thought that we were somehow being "ripped off" by not having any more scans after the first post treatment one, and like you, I was concerned because so many on this site had multiple scans.

I am now ok with the idea after reading as you have, that it is within guidelines and also realising a recurrent tumour would be visible to a doctor looking for it (or signs of it anyway). My reading suggests a visual check seems to be at least as good as a scan.

The only problem is that distant mets would not be picked up with visualisation. I still worry about this but the oncologist seems confident that careful history will point him in this direction should it be needed. Unsure what the pointers are but assume Alex might start feeling tired, losing weight again etc.

I figure that Alex is our oncologist's success story so he also has a vested interest in making sure no nasty distant metastasis sneaks up on us all.

Hey, Have not been on the site in a long while. I am now 2 years post treatment and my last PET in August of 2011 was clear. I am scheduled for another PET in August of this year. I had one positive PET scan in the anterior area of my throat that was determined to be physiologic uptake, possibly from irritation from coughing or just running my mouth talking all the time , LOL. My ENT did put me on Nexium and Zantac. Said I have LPR which is a type of acid reflux. He did not want me to have a recurrence triggered by the acid reflux. I did not even realize I had a problem with that. I have had problems with dry mouth since my radiation was completed. I see my ENT about every 2 months now and my Oncologist about every other month as well. Other than the dry mouth issues, I seem to be doing ok. My ENT has been scoping my throat on a regular basis. I am hoping at some point I can reduce the amount of meds I am on for reflux. Don't know what the long term affect of high doses of those are.