I am a year out and my doctor has not mentioned a pet scan. I, being the coward that I am, I am afraid to say anything because I don't want anymore bad news. He's very renowned in this area. I go to him every 2 months still. Should I say something or just let it go for now? REMEMBER. Coward, have to have meds just for cat scan. Is the Pet like the cat scan by the way?
Thanks
Debbie

The PET scan takes longer. They inject you with a glucose solution which has to circulate for 45 mins. before your PET scan. Then you must lay perfectly still for 20-30 mins while they run the scan. So you might want to take an ativan or zanax if you consider yourself a baby. It's not bad---just very boring.
I had a scan two weeks after diagnosis, then another two months after treatment ended. I am 7 months out, and they haven't mentioned another upcoming scan. They have, however, emphasized the need for a yearly chest x-ray.
Scoping the throat and feeling around the oral cavity is considered the best follow-up according to my ENT.

I had 2 PET/CT scans following treatment. The first one after 2 month the second after 6 month. Both were ordered by the RO, the oral surgeon was somewhat surprised that I had a the second one so soon. He too favors a more hands on approach, which IF the lesion is visible is a lot more sensitive than a PET scan.

M

I am 18 mos post Tx and I haven't had a Pet nor has one been mentioned. I have had 3 cats but none in the past 10 months.

David,
Do you mention them or ask why? How do you feel about not having one? I quess I am in the scared mode. Tomorrow I will be all better until the next time!

David,

I find it odd that you have not had a PET since we go to the same CCC. McCaffrey ordered both a PET and a CT with contrast at Bill's second follow-up (3 months post treatment.) Just curious??

Deb

if i can do a pet any one can
i never was scared till i went thru radition.some thing about the table,just had my last pet scan thursday it is not to bad.try to relax
they will put straps across you if you ask i always feel like im falling but that is just mmmmmme. ialso have m.s. so that is why
i get to go for a biospy next thursday.take care you will be fine

I guess I'm TOUGH !! LOL I won't see Trotti (my RO) until Aug. I'll ask him then or sooner as we exchange e mails from time to time.

No it doesn't bother me as I really have trust in Moffitt and more importantly Dr Trotti.

Oh David, I know you trust the Moffitt H&N docs as well as we do and I have mentioned that I really liked Trotti--liked him even better when he assured us that he knew our local RO and that we would be more than OK getting rads here.

I guess we both need to mention that those doctors do a very thorough exam by way of scope and just feeling with their hands--so they use a combination of scans and tactile measurments. Interesting though that there seems to be an individual approach to what scans are ordered. When you do find out, I would be interested in knowing Trotti's answer.

Deb

Just to chip in on this thread, at my CCC (Arthur James Cancer Hospital & Solove Research Institute @ Ohio State), I am seen routinely by my surgical oncologist, radiation oncologist and medical oncologist. I see each every 6 - 9 weeks, and with staggering of the appointments, it is seldom more than 3 or 4 weeks without seeing somebody.

I finished treatment in early July, had my first PET in early October (ordered by MO), and a repeat in early December (due to suspected false positives on first one). At every surgical oncologist appointment, they take a current history, do vital signs, examine oral cavity, tongue, oropharynx and larynx with mirror and/or scope, and do a thorough palpation of neck. RO does the same routine, but adds examination of axillary areas and listens to chest. MO does visual of throat, palpates neck, chest abdomen, and draws blood. Every other visit or so he will order a chest X-Ray.

My RO and surgeon both seem to prefer the physical examination to scans. MO puts a little more weight on the scan portion. RO told me that after thousands and thousands of patients, he has a good ability to detect even early recurrences with physical exam, and can generally tell which patients are going to do well and which are not through the clinical course. Don't know how true that is, but since he thinks I'm doing great, I might choose to believe him! ;-)

Wow, Jeff, it sounds they are being totally thorough with you! I am seen every two months, alternating between MO and Surgical Oncologist. I haven't seen an RO since July. Nobody uses the mirrors when checking my throat. No blood work, although when I requested it in December they were happy to order it.

The fact is that PET scans are not indicated as standard follow up by the current NCCN Oncology Practice Guidelines. Some doctors order them anyway and there is no consensus of opinion.

There have been many discussions of the post Tx surveillance issues with PET scans and doing a search in the archives will reveal a lot of interesting information and may even answer all of your questions and reveal some things that you may not know...

For the record, no current scanning modality can detect a tumor 2mm or smaller (about 1/8").

girlcat, I have concerns that they are not visually examining your throat with mirrors or an occasional scope. The visual and palpation exam is the NCCN recommended gold standard followup exam, along with semiannual bloodwork, TSH level test and annual chest x-ray. If you are not getting these you need to find out why?

Deb,

Will do assuming I remember. LOL

I agree with Jeff seeing as we have the Same Drs to see at Ohio State. Of course right now, it's been since the 3rd of Jan, but with all these other Drs here working on me, I have no idea when i will get back to Ohio State.

Hi Gary---I should have mentioned that I am getting scoped every two months! No mirrors though. I am 7 months post TX, I will be due again for chest x-ray in August. As far as the thyroid goes, it is very likely that I will be having it removed in the next few months because of suspicious nodules. As for other bloodwork, what would they be looking for? My MO last ordered bloodwork in June, but I requested it in December because I suspected I was anemic(I was).

I remember my ent telling me that he wanted to wait at least 6 months after rad and even longer because he did not want me to go through the false positives pet scans can do. Since then, I am afraid to ask, because I do not want to think I am dying again. I had a horrible bout with depression and he knows it. I think we are both afraid to mention it.
Do you have to get put all the way in a tube or is it more like a ct scan with a donut shape?

You are very slowly pulled into a tube. I kept my eyes shut. Honestly it is not that bad. I used the time for meditation.