Hello all!

Tomorrow is my first post-treatment scan (tx ended 3/15). While I am not too nervous about the results, I was somewhat curious about something.

My earlier scans were all the combined PET/CT scans (including the delightful Flourine-18 radio-isotope IV). Tomorrow I am scheduled for an ordinary, run-of-the-mill, ho-hum CT scan of my head and neck only (with IV contrast dye).

Is it SOP to have just an ordinary CT? Could also be for mapping purposes since I have my selective dissection later this month.

Any ideas?

Thanks.

Tim

The PET/CT would probably yield major false positives so soon after Tx. It's better to wait at least 6 months post Tx for a PET/CT. Typically initial treatment planning for radiation is done with a CT so they probably want to do a comparison.

Sometimes PET/CT's are also initially done for triage purposes as well.

The main thing right now is that the head & neck surgeon is happy with your response to treatment (and they can typically visualize that). The scans are just a small part of the total diagnostic package.

Thanks, Gary . . . I am just being annoyingly curious. One of those who wants to know how and why thinga work. Of course, I will promptly forget . . . . :-)

Curiosity is good - you really have to be your own advocate.

The actual recommended NCCN oncology pratice guidelines only call for an annual chest x-ray. This is a matter of controversy. Some here have PET/CT's every 4 months. At the CCC I go to they recommend an annual MRI.

I asked the RO last week about the annual chest x-ray and whether a spiral CT would be better and she stated that although the spiral CT produces "an exquisite image" she didn't feel that it was necessary - she even doubted the need for an annual chest x-ray based on my years of being a non-smoker. She is listed in the Castle book of the top doctors in the US and the highest rated IMRT RO (and clinical radiotherapy professor) at the seventh highest rated CCC so I tend to respect her credibility and I trust what she says.

If you knew me you would know that because of my many years in the medical industry, particularly radiological, I question the heck out of my doctors.

Gary, While we are on the subject, just a quick question. Rod only had 1 pet scan 4 months after tx. We are now 10 months out & his ENT hasn't said anything about a ct scan or a pet scan, he just uses the scope & mirror. Should we ask about it or just assume the doctor knows whats best? At his last appointment, the doctor said everything looks great, call me in 3 months. Should we check with the radiologist?Thanks alot!Maureen

I had an mri & combo pet/cat scan about 2 months after treatment ended. I assummed they would use these as a baseline for future scans. Since then I've received a MRI & CAT scan every 6 months. One of throat and one of lungs.
Next scans for me will be late June, early July.

So far no change in how I feel. Still receiving chemo. two weeks on followed by two weeks off.
The scans in late June will determine my next schedule of chemo.

Danny Boy

Maureen,
the visual & palpation exam is the gold standard for H&N followup. The scope takes it even further. I haven't had the scope in over 1 1/2 years now. Truthfully my H&N surgeon doesn't rely on scans -it is the oncologist and RO who order the scans.

There is no pat answer here. The decision to scan or not is based on many variables - staging, health history and habits, response to treatment, tumor type and location. That is why there is so much controvery over the "to scan or not to scan" issue. Plus it's very often not the warm & fuzzy panacea that one would expect. Oftentimes there are anomalies, that may not mean a thing, except to cause way more angst. I didn't have a single clean MRI in the beginning -when what I WANTED to hear was that I was cured!

Then, omniously, there have been a few here who have had other issues, such as lung mets, detected early because of PET/CT's, etc.

This issue requires just as careful consideration as the initial treatment decisions.
I am sorry if this has raised more questions then answers but it is the way it is.

After having had the scan and thought about this, I really don't think that this scan was anything other than a mapping exercise for the selective dissection later this month.

Thanks for all the inputs Gary. It is nice to know that there is a non-physician "expert" arounfd.

Thanks guys,

It was something I was just curious about. It seems like alot of people about 6 months after tx ends have pet scans or chest xrays.Its not that I'm trying push it and Rods doctors say he responded really well to tx and is doing very good but he WAS stage 4 so in my mind...it is better to be safe than sorry. He has only seen his ENT doctor for his last 3 check ups(he does the scope)should he sched. with his oncologist just to be safe? I feel like I am dwelling on getting to this 2 year mark even though I know that doesn't mean he is out of the woods. How do you all go through the day without thinking about C? I am naturally a worry nut so I guess that doesn't help me much.LOL His 39 th birthday is on Saturday, we were saying how last year at this time he had all his teeth extracted and was getting ready to have the peg tube put in. What a difference a year makes! He will definately celebrate! :)Thanks to everyone here, these boards are great and it really helps when your having a bad day to read all the positive posts! God bless! Maureen

I played 18 holes today and didn't think about cancer ONCE! The further away you get from it the less fear you will have. In the beginning I felt angst for days prior to an exam. Now I don't really think about it. It's not a whole lot different than going to the dentist. It is true though that you can be cancer free but not free from cancer.

In the beginning I saw all of my team doctors at 6 week intervals. At 25+ months I see the RO and Onc every 6 months and the H&N surgeon every 4 months. I get an annual chest x-ray and blood work every 6 months. They always do a TSH level, WBC, RBC and complete liver function (because of my hep C - probably not the cancer).

The 2 year mark is significant. By then, IF you were going to have a recurrence, there is a 95% chance of it happening within the 1st 2 years. Although they say it's 5 years to really be declared cancer free.

I think we were wired to worry but just take it one day at a time and live each day like it could be your last.

Maureen,

My understanding is that it is not the ENT typically who orders the follow up scans but the radiation oncologist. After my radiation treatments, the radiation oncologist wanted to see me 1 month after treatment ended, then 3 months (at which time I had a CT scan), at 6 months (another CT scan), at 9 months and approx. 12 months (another scan). I saw the ENT surgeon every 6 weeks following the end of radiation treatment.

I would contact your radiation oncologist and make sure that he/she is comfortable with the monitoring schedule and that you and your husband are as well. As Gary noted above, every doc seems to have a different approach to imaging, some prefer MRI's, some CT scans, some PET/CT scans, some x-rays.

Best, Sheldon

Thanks! I appreciate the replies! I will definately talk to Rod about seeing his radiologist for his next check up. I am surprised his ENT hasn't mentioned it, but that's okay maybe it's up to the patient.

Gary, You are so right about the further you get from tx the less worried you are. I remember Rod's first couple check ups, we were nervous wrecks for days now after a few good reports, it isn't as bad. I think a good report from the radiation oncologist will help too! He did have a good birthday weekend, alot to celebrate compared to a year ago! Thanks again & God bless!Maureen