I am curious about PET, CT, or other scans after treatment. I have been cancer free for two years now and regular physical and oral exams by a dentist, an otolaryngologist (long name for an ENT) and my radiation oncologist. I have had no scans since radiation finished in May 2004. I asked the ENT the other day about scans. His response was that he only calls for a scan if a physical exam reveals anything unusual. He is a top ENT & should know his business. And I am indeed grateful to be found cancer free at the 2 year stage.

However, I would like to know if this is the standard or have any of you had scans done even when physical exams were positive. I may be overcautious but with having recurring cancer once, I think I have good cause to think this way.

This is absolutely the best oral cancer forum going and I wish everyone the best.

Jim Haucke
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SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)

Hi Jim,

You are going to get many different answers here. I had left lateral tongue scc and had surgery only. I was T1/NOMO. I'm just short of one year.

My surgeon's only recommendation is a chest x-ray once a year. I had it 2 weeks ago and it was clear. No PET or CT scans as follow-ups. I see him every 3 months now that I have almost hit 1 year. I intend to get a laryngoscopy once a year. This is my decision, not a recommendation.

My follow-up is probably the least comprehensive of the answers that you'll get. I have no idea if it is enough, but I'm comfortable with it as it is right now.

Jerry

Hey Jim,

I was T2/N0/M0 and like Jerry am also just short of one year. I am seeing my otolaryngologist every 3 months, and he ordered a PET at 6 months (clear! yay!). I don't know if I put too much stock in it or not, but the PET scan let me breathe a huge sigh of relief.

He hasn't said anything about which scans I'll have in the future or how often. I'll make sure to ask at my next visit.

Thanks,
Jennifer

If you are just seeing an ENT or head & neck surgeon that will be the typical response - no scans - for some reason they are just not into them. The chest x-ray is indicated on the NCCN oncology practice guidelines. It's my RO from the CCC that orders an annual MRI for me - my HMO will do anything she says. She doesn't think i need the annual chest x-ray go figure. Some here get semi-annual PET/CT scans. I am going to insist on an annual PET/CT because after three years I feel a bigger risk with distant metastesis since my tumor was so large, it was estimated to be 2 years old at Dx. My first PET was ordered by the MO.

I had a PET and MRI 3 months after the end of rad and chemo. I don't actually know when I am supposed to get another. I had a checkup with my ENT just last week and forgot to ask him about that! I'll ask ( I need to call his office anyway about something else) and post when I get his answer.

Nelie

Standard operating procedure at Johns Hopkins, for what it's worth, is that all head/neck cancer patients get a PET/CT scan at 3 and 6 months' after treatment, then (usually) it goes to every 6 months for two years, then annually for some years (3 more I think).

Barry had the first two scans (clear!) and his next one will be a year after end of treatment, unless RO feels it is not necessary. Our ENT surgeon also orders scans but is wary of false positives -- if there is a suspicious reading, he might want an MRI to check the area, or even a biopsy if practicable. Actually, speaking to the JH radiologist - who only reads HNC and brain scans so he's seen 100s if not 1000s of them -- he says that rate of "false positives" is less than 10% and maybe only about 5% -- however, inflammation, healing, and active infection can produce "activity" and this requires experience to sort out. Barry's last scan showed activity in chest area which they said was residual from his (earlier) pneumonia and noted it needed to be followed-up on and treated.

PET/CT scans are supposedly the best "scanning tool" available but it is only one of the many tools your doctor will use to monitor you after treatment. Physical exams are also important. Barry is in a study at Hopkins looking at blood/serum markers for HNC and maybe in the future this will also enter the tool chest.

Gail

I had a PET Scan about 5 months after surgery and (2 months after completing the radiation & chemo) and it showed very, very minor activity on the opposite side of my neck. The doctor seemed to dismiss this activity and told us of the false positive probability, but said they would keep an eye on it. In February, through self examination, I found what I thought was a swollen node and I had some physical pain when I moved. The surgeon felt the area and told me that I had nothing to be concerned about. I went home happy, but a little part of me was still concerned. The following week, my husband and I decided to see the RO that had treated us and he said he did feel a swollen node. They ordered the CT Scan and earlier this week, Tuesday, I had the neck dissection. (Just got home from the hospital yesterday.) Not trying to be a bummer here, but I strongly feel that you have to be assertive(especially with ENT's). The good news is that the node they removed this week was only 1 cm at most.

Unfortunatley there is no SOP for PET/CT (or even just PET) post Tx in the NCCN oncology Practice Guidelines. It's done, or not done, on an institution by institution basis. It is the most expensive and time consuming scan and I am sure that the bean counters and insurance companies have strong objections to paying for them. Actually I just checked and even the NCCN workup doesn't include PET or PET/CT (only for "occult primary" and nasopharnyx tumors so far (if not found by MRI or CT)

Jim,

Our RO at our CCC is strongly opposed to scans, our ENT says he will order them if we want them and our Chemo oncologist demands them every four months.

The last scans were done last November after 4 months from end of treatments as ordered by the chemo doctor. We got all kinds of bad news following the scans during an hospital stay from attending doctors regarding recurring tumors in the tongue and neck. We were devastated.

Then we went to see our ENT. He tolds usa that the scans were normal. A few days later went to go see our RO and he was furious that the scans had been done. He basically said the the scan report was not worth the paper was written on it and that he had looked at the scans and there were no tumors.

The RO continued to say that scan reports which are written by radiologists tend to be pessimistic because of liability reasons and than it is left to them (RO's) to explain the scan reports.

In our case the RO called the radiologist that had written the report and requested that the report be amended.

We saw our Chemo doctor last week and this doctor wants more scans done. We feel we are in a trap.

Hi Vin,

That's a shame what they are putting you guys through. You obviously need a team that are all on the same page. I've been reading posts here for almost a year and have never seen such a lack of agreement. Is there any way you can get them all to communicate with each other?

Jim,

As you can see, as I said above, there is not going to be any one answer, there is no standard of care that every doc follows.

You've got to go with what feels best for you and will leave no question in your mind. It IS a very difficult decision.

Jerry