My husband will be starting radiation next week. He had surgery Sept. 6th. The radiation doctor, which is a different city than where the surgery was, has recommended a PET scan. Is it normal this close after surgery? Wouldn't the surgeons/specialists have ordered it if they thought it was necessary? My husband doesn't want to do it at this point. I don't know what to do or say. Any advice would be helpful since we are so new to all of this. Thank you!

I should also mention that this doctor wants to do the PET scan to make sure there isn't cancer elsewhere in his body, not to necessarily check for oral cancer. There was no cancer in the lymphnodes.

Hmm. I had a PET scan before my surgery, just to make sure the cancer wasn't anywhere else. Then, I had another one when I was three months out of treatment. I am now having CT scans every 6 months. My PET scan prior to surgery was prescribed by my surgeon, and my subsequent CT scans have been prescribed by my oncologists. The PET scan certainly isn't painful, and I didn't have any problem with it.

Only a Whole Body PetScan could possibly detect "if there is cancer somewhere else in the body". I have never had a whole body Petscan, just head and neck.
Since you asked for opinions, I'm with your husband on "just say no" but I am very biased against Petscans because of my own terrible experiences with them. I received both false positives (the Petscan said the cancer had come back when it had not) and false negatives (when the cancer finally did come back, the Petscan said it had not). I never had this problem with MRI/CT and that is all I get now.
On the other hand, some Radiation doctors (RO as we abbreviate here)use a Petscan instead of a CT or MRI to map out the radiation field. Your husband will need some type of scan (CT, MRI or Pet) for the RO to properly set the 3D conformal radiation field used in today's modern radiation types(IMRT or IGRT or SRS) if he hasn't already had one.
Hope this helps
Charm

He has already had a CT scan and an MRI. That is why he is thinking that maybe it isn't necessary right now. His two surgeons and oncologist, who he has seen several times since surgery have never mentioned it. This doctor the other day was the first. Thank you for your response.

Missy

I often bounced one doctor's ideas off against my other doctors.
This sounds like an opportune time to simply ask those two surgeons and oncologist what do they think of getting this Petscan.
You can do it via email or phone message as it's a simple enough question. something along the lines of: the radiologist is thinking of a petscan but since you never mentioned it and my husband feels it's overkill, what do you think?
Even though we are experience cancer survivors and caregivers here, the majority of us are NOT doctors. One of the first things I learned in law school 40 years ago was:
It never hurts to ask.
Keep the Faith
Charm

We do have an appt. this Friday with one of the surgeons. That is definitely top on the list of questions we have for him. I just find it surprising that after my husband has seen 6+ doctors involving his surgery, hospital stay and recovery now is the first time a PET scan has been mentioned.

My ex-husband had a scan to check for distant mets. His PET went from his head to his knees...why there? dunno. It's a good stopping point past where the organs reside, I suppose.

The PET showed bilateral lymph node involvement...nothing anywhere else. The RO interpreted the PET results as indicating metastatic cancer. What happened was the PET lit up nodes involved in an infection from which my ex-husband had just recovered. He had an MRI recently and nothing showed up in his nodes. They were never excised and he didn't receive treatment.

Since I don't see any mention of a ND, I was wondering how they determined there was no cancer in the lymph nodes. Was that just based on a CT, or MRI?

My CC extensively uses PET/CT scans - all of mine have been full body. I had one prior to my ND surgery and I have had them for all my post TX follow-up scans.

Their logic is they have very good PET/CT scanners so, at least in my case, they prefer to have the PET results along with the CT results.

Currently my CC does not have a PET/MRI scanner. Also, they do not use PET/CT result for planning. They have dedicated CT planning scanners for that.

In my opinion, the PET results might help with the DX and any good CCC will consider it along side other tests and scans (CT, MRI, Ultrasound, biopsy, etc.).

I'm not sure what ND means. They removed lymphnodes during surgery and did biopsies on a random 44 of them. No evidence of any cancer. The surgeon wants to wait til after he completes radiation since it won't change this course of treatment. Sorry it took me so long to respond.

ND = neck dissection, (mostly lymph node removal but may include removal of other fatty tissues and musculature).

From reading what you wrote your hubby did have a neck dissection. Good luck with everything. I'm not into overkill, but a scan doesn't hurt, might help, so why not?

ND stands for neck dissection, which is what they call the removal of lymph nodes (such as your husband had) as well as more radical procedures involving the removal of other bits. Neck dissection is, as my husband termed it, an 'unfriendly' turn of phrase, and I think they just described it as removal lymph nodes (also technically correct).

ND means "Neck Disection.

PET/CT's are reportedly 98% accurate. Recent healing can give false readings as others have mentioned. Since the scan has the advantage (over a plain PET) to locate regions of interest with great accuracy, because of the CT aspect, I would think that the doctors would ignore the areas where healing is happening and simply look for metastasis elsewhere. The NCCN Oncology Practice Guidelines do not recommend post Tx PET or PET/CT scans, although some institutions routinely order them. My CCC recommended an annual MRI.

Early scans of any type, particularly post Tx, will show all kinds of regions of interest so don't freak out (if you get the raw scan report) before its interpreted by your team.

When I was being set up for radiation, I got all 3, pre Tx, PET, CT and MRI. They needed them to plan the radiation treatment protocol.

My PET scan was a full body scan.

3 months, post surgery, is not that close. Some here have have PET scans 3 weeks post surgery. He still may get false positives at the surgical site, as the uptake in sugar (and radioisotope) is very similar to the uptake from a tumor.

If it were me I want want to know the "risks and benefits" of the scan and why the RO is ordering it, before simply refusing it. Tongue cancer tends to be more aggressive so extra vigilance is in order.