Question about scans for all of you. I had PET/CT scans after my diagnosis but before my surgery on May 11th. My doctor told me that they will not be doing scans again until 6 months after the radiation/chemo is finished because they are getting way too many false positives at 3 months with the after effects of the radiation. Is this similar to other's experiences here? Also, will they give me a PET/CT before my radiation begins in 2 weeks? I realize I just had the surgery 1 month ago, but wouldn't they want to know if something else is growing so they could target that with radiation too? Thanks for the information.

I had a CT scan before my surgery and then one after radiation and that was it. I'm three years from treatment and I have checkups every three months, bloodwork, and a yearly chest Xray.

Hope this helps.

Unfortunately, this is one of those questions that is going to give you so many different answers that you will probably have more questions than when you started.

I've been on this forum for over a year and have yet to see any consistency about this question, as well as many other topics. You have to go with what your doctors are recommending and have trust in them at this point. It sure would be nice if there were set protocols and then everyone would be much happier as we would all have the same treatment and follow up. Someday, maybe, but not now.

Since you asked, I have never had a PET scan and there are none planned. I have had surgery only and that, too, puts me in the minority. I see my surgeon every three months right now and get a chest x-ray once per year.

See what I mean?

Jerry

They will do a CT scan on you before radiation because that's what they use to set up the radiation plan. As for the PET, it gives a lot of false positives and Jerry's right that opinions on how useful they are differ widely.

Nelie

I'm also in the minority with Jerry having only surgery - no radiation. But, I did have a CT before my initial resection and a PET/CT in April about 2.5 months after the surgery. There are no plans on any additional scans for me - unless we suspect the cancer has returned. At that point - doctor says another scan may be done.

On a side note - my initial CT DID NOT SHOW my 2 cm tumor at all. So, there are false positives with PET and false negatives with CT - although I don't think that happens all that often.

PET scans are prone to show areas of rapid healing process, infection and sometimes for reasons as yet unknown (besides cancer). The rate of false positives causes many to suffer from unfounded fear and sometimes additional treatment that is not necessary. It is sometimes tough to comprehend why less is more with regard to advanced scan technologies. Trust that your medical team knows their stuff. As you have read many of us have never had any post treatment scan. I do not believe we are a minority either. Sometimes it might simply be what kind of insurance we have for coverage. Pet scans are way too new to know whether they help cause better survival or not.

Sometimes not knowing is a blessing.

It's interesting. The ENT I saw in Boston (who helped me find the speech pathologist who had expertise in swallowing problems for radiated patients) said they don't use PET scans--I assume because of the problem with false positives.

I've had two so far and I heard from my ENT here (in NY) that both showed no signs of recurrence. But I read over my medical records when I was carrying them to the doc in Boston and in fact the first PET scan said there was an area that lit up on my tongue and in my throat that could be from healing tissue or could possibly be a sign of recurrence. When I had that first scan done I still had a LOT of inflammation in my mouth and throat and my ENT certainly knew that so I guess he decided it wasn't something to worry about.

The second PET scan I had just over a month ago, though, was done by the same person and because they had the September baseline, the report from this one said clearly that although there were some areas that still were lit up, they were in the same place (but not as strongly lit up) as the September scan and so were pretty clearly due to healing tissue or residual effects of surgery. The report concluded "NO signs of recurrence". So if you get a baseline PET done it can help interpret future PETs better. But I can see why some docs wouldn't want to go near them. if my ENT was being really paranoid about having overlooked something, who knows what he would have done in reaction to that first scan.

Nelie

Sounds right to me. Husband had pet when first diagnosed, showed nothing, had one more in between chemo and radiation, showed nothing, then had one about 6 weeks after finishing treatment. Stage 3 SCC, unknown primary, 1 right lymph node removed. Last pet left sternum lit up, follow up mri showed a little somthing, dr ordered biopsy IT WAS NOTHING!!! I thank god for all the drs involved to be cautious...but damn we were scared.

Just a few things:

1. Most ENT's don't order scans.

2. They (meaning my onco;ogist) gave me one as part of my original diagnosis as part of a triage, because I was advanced stage. They wanted to see if I was treatable.

3. A few here get regular PET or PET/CT scans.

4. Some have had none.

5. The NCCN guidelines for oncology practice don't indicate them yet as a standard part of followup - just regular physical examinations, intervals determined by time and an annual chest x-ray.

6. Any followup scans, annual MRI, are always ordered by my RO but she won't order a PET -and she's a professor of clinical radiation oncology at a top CCC.

7. A few here have had potential distant metastesis caught early by PET ot PET/CT.

8. As Mark mentioned, false positives occur frequently in the post Tx while healing is still going on.

9. We have had many discussions on PET or not to PET -do a search on PET and you will find everything there is to know about PET or PET/CT.

My husband had a PET Scan this past Saturday and a CT Scan this past Wednesday. These are his first scans since completing treatment. We are waiting for the results (with knots in our stomachs). After reading all of these messages I'm not feeling too comfortable with these tests. Maybe he shouldn't have had them. We don't need anything else to worry about.