Anyone here have a doctor not recommend a PET scan? The first doctor we saw does not recommend a PET scan. He says it's not indicated. He ordered my mom head and neck ct which doesn't show lungs or brain. I've gotten 2 options since then and the other doctors did recommend PET scans. Also, the first surgeon doesn't do PET scans after. Anyone have a doctor go this route?

Actually, there is no general consensus for any post treatment scanning surveillance, and according to NCCN Guidelines, only certain cancers like the oropharynx, hypo-pharynx, larynx, T3-4 disease only, and not oral cancer, say to have one 3-6 months post treatment, and that's as far as it goes in absence of any signs of cancer or recurrence, so it depends on the doctor, hospital and even the patient themselves on what type of scan, if anymore, can be done.

All my doctors I had did and do a post treatment scan from 3 months, sometimes was 4, 5, even later. Mostly they all were PET/CT, but the follow-up scan, 6 months later, may have been an MRI since I can't have the CT contrast. Even with an MRI they want your GFR around 35, and just made that. Some doctors like to switch them out PT/CT then a CT. My first time with cancer, and with induction chemo in 2009, I was so sick, weak, I couldn't have a PET/CT until 9 months later.

There are some that say a thorough visual and palpable examination is just as good, even a self exam, which is true to some extent, and the fact that I found all my cancers, 6, myself except for one, but studies show that a PET/CT is superior, and finds cancer more often, which can go as low as 5mm. Now with a pec flap, 5 neck dissections, a palpable exam is almost useless, so I require surveillance scanning with my history of recurrences, and have had about 26 of them.

Also, with HPV oropharynx cancer, the rate of recurrence seems to be increasing in some 3 years later, even 5, in distant areas, some not normally associated with distant metastases, while non HPV levels off after 2 years, so they are saying not to ignore unusual complaints and consider while body scanning like PET/CT.

I hope this helps

Did you have a PET scan when you were first diagnosed? I feel like its wrong to send my mom in for surgery before knowing if the cancer is anywhere else in the body. I don't know.

I initially had a CT scan, with contrast, for swollen lymph nodes, which showed suspicion about the same time I had a FNAB, which confirmed the cancerous lymph nodes, so a PET/CT scan was dine to help ascertain a primary in the head and neck, and that showed extensive cancer in BOT, tonsil, vallecula, three bilateral lymph nodes, but a pandendoscopy or triple scope, under anesthesia, confirmed T1 cancer only in the left tonsil, in addition too the two lymph nodes. No scan is 100% accurate or can prove cancer, only a biopsy can, even that is subject to errors.

A PET/CT should be considered for stage lll and lV oral and oropharyngeal cancer, according to NCCN Guidelines, but as said, they are guidelines, and doesn't consider other factors that may be involved.

I hope this helps.

I was treated at Johns Hopkins. I had a PET 6 months after treatment and was told no other scans. They feel that if something is amiss, I'll know and if further examination warrants it, tests/scans will follow.

I had a scare shortly before my 1 year post treatment where the nodes on the opposite side from where the cancer was swelled quite a lot. They were hard and painless. Upon an exam with my team they did a CT. Fortunately it was benign and they believe it was caused by a viral infection.

Other than that, I get a scope, poke and prod every 6 months out until the 5 year mark. So far I'm NED and was told for all intents and purposes, have beaten the initial infection.

Hopefully it stays that way!

Positive thoughts

"T"

At MD Anderson for her recurrence they did a CT first because they thought the timing was too soon from her biopsy. They did, however, do a full body CT.

Kris had a PET 3 months post radiation treatment as he still had a residual bulky node. The PET showed no cancer. Yet , just a few months later on routine scoping, his tumour at the Base of Tongue was back.
He then had salvage surgery. No scans at all post surgery. None at all. Just routine scans 3 monthly. He is now 3 years and 6 months post surgery.
Remember to stay vigilant. Report pain, new lumps, bleeding, sores etc.
Tammy

When I finished my last Rads I had a PET/CT scan 3 times the 1st year and twice a year for the next 4 years, I was scoped every visit until the 5 year mark , I had chest X-rays once a year until the 5th year, now on my annual visits I get the scope and poked and prodded. Hope this helps. Semper-Fi Bob

I have never had a PET only CTs - and I was told after a first and a second clear one... NO MORE.

the second one was one I went through my family dr to get.

hugs.

I have 3 doctors on my team- (1) chemo oncologist, (1) radiation oncologist and (1) ENT surgeon...only the surgeon is recommending a PET for follow up, but is leaving up to me...the other 2 Dr.'s don't like the false positives AND then the fall back of a false positive at this stage- CT with and without contrast; as well as detail examination...logic being do the fall back to start.
2nd based on my experience- my original diagnosis came from a swollen lymph node...surgeon planned on going in for biopsies...but wanted a PET before- PET came back with hits on tonsils (both) and base of tongue left side...surgeon took tonsils (both and biopsy of base of tongue left side...then based on his experience took base of tongue left side, and a few other locations...
tonsils were negative as well as base of tongue left side...only by the Dr's experience did we find primary site at base of tongue right side...PET scan did not show any hit on base of tongue right side...so not only did I have "false positive" and had "true negative"!