Hi All: I am nine weeks post TX with my first Petscan on 6/20. The thing is, it will be my only Petscan, say the docs. I see on this site people having multiple Petscans. I will have that scope thing done once a month during the first year, then every two months, etc. for five years. But only one Petscan! That seems odd to me since the Petscan, if I am not mistaken, can see cancer earlier than the scope. Is this an insurance question I wonder? -Michelle

Michelle, my regimen was PET/CT every six months for the first two years, which just ended. I have Anthem Blue Cross of California, a company not known for their beneficent generosity...

From now on I believe they'll only be doing the tests annually until the 5 year mark, and then no idea after that. If you think yours is an insurance rather than a strictly medical question I suggest you put in a call to your company.

Good luck!

Hi David: Thanks for replying. Have you had to have the scope down your nose and into your throat? I forget what it is called, maybe a laryngoscopy. It is not pleasant and I have to have it done once a month for a year, then every two months for the second year, etc. -Michelle

Hi Michelle

Alex and I were told the same thing as you - PET at 12 weeks after treatment and then only if indicated. We just went for our 9 month post treatment check up yesterday and didn't even get the scope (for which Alex was extremely grateful).

The US head and neck cancer guidelines suggest follow up should be

History and physical check up every 1-3 months for the first year, 2-4 months for Year 2, and every 4-6 months year 2 to 5 and then every 6-12 months 5 years and beyond. I assume this also means the scope if the doctor is inclined.

Post treatment imaging (PETs or CTs) within 6 months of treatment and further imaging based on signs or symptoms.

The guidelines also talk about dental evaluations, counselling for smoking cessation and TSH levels at 6-12 months which I will not go into here.

Google NCCN clinical guidelines, register and then look for Head and Neck. The website is currently down so I can't tell which page to go to (it is a long pdf document) but you are looking for a hyperlink FOLL-A (stands for follow up I think) which will take you to the post treatment page.

So I guess the good news is the docs are confident your treatment has been successful.

Karen

Thanks, Karen, for the positive twist on the lack of PetScans. I will talk to my radiation oncologist when the first result comes in and ask for an explanation for why only one. I agree with your husband: those throat scans - laryngoscopy, I think they are called - are horrible. -Michelle

Michelle, I've had the rubber tube nose job twice in the last 3 months and I agree: not nearly as fun as it sounds. (although it beats a tracheotomy by a mile...)

Mainly my ENT and RO both stick the old lighted wand down there to get a looksee. The ENT usually sprays a numbing agent first, which tastes about as bad as anything I've ever had, but is still preferable to El Tubo, IMO.

There must be a reason why they use the tube, feel that it's superior, etc.

All I can say is hang in there!

Klo - Michelle -

You do not have to Google around to find the NCCN guidelines, they reside native on the OCF web site, as we are a partner with them in many ways. The link to them is under treatments, but so you don't have to wander around the main OCF site here it is

http://oralcancerfoundation.org/treatment/guidelines.htm

Michelle,

I had a PET/CT Scan when first diagnosed. Now I have CT Scan once a year. Sept. will be my third CT Scan. My surgeon told me no more PET Scans. It's not because of my insurance I have good insurance. I don't know his reasoning I never asked.

Connie

Hi Michelle,
This is the same scene here as well. Though it is canada where goverment covers the medical to most extent.

My husband had a CT scan after his neck dissection in april. Then they have been looking through the scope. Docs have adviced us that they will keep doing this way evry six weeks.

I was worried too as the CT scan is far ahead than being checked out by scope.

I guess then the Doctors know what they are doing.

Roma

Was told by my dr. Since I've had radiation they check me monthly - but will CT me at 3 month periods first CT has to be at least 3 months after to avoid false positives. The scope gives them a good view of what if anything is going on in your throat nasal cavity etc...

Hugs to you all.