Hey all,
I'm trying to gather information for my Dad who is an 8 year stage 4 throat cancer survivor treated at a CCC. In all the post-treatment surveillance appointments, the only imaging they ever did was chest x-rays, and that maybe only once. He didn't have any other imaging until this recurrence. I find that odd. Is this typical? Did he fall through the cracks b/c he didn't advocate for himself?
Thanks in advance!

If your father still sees this doctor, ask him what his usual follow up care includes and if no scans, why not.

Jenni, the OCF forum is made up of patients and caregivers, not medical professionals. Since we have not gone thru medical school or trained professionally with patients, its a bit difficult for any of us to second guess why a doctor does what they do.

After treatment care seems to vary considerably. Some patients get scanned and others dont. Im not quite sure what the reasoning is besides possibly a concern about the patient getting more radiation.

There is no general consensus as far as post treatment scan goes, minus any absence of a suspicion for a recurrence. NCCCN guidelines recommends a 3-6 month post treatment scan only for T3-T4 disease in the oropharynx, and a few other areas, and nothing after that. Some doctors feel the palpable, visible, mirror, and scope are good enough, while others follow a more scheduled scanning, maybe based on other professional societies like otololaryncology, and have PET/CT scans around three months post treatment, followed by 6 months, and never made it past that before a recurrence, but would think the time would be greater thereafter as time goest by. Other studies showed that a PET/CT is better than a physical exam in finding cancer, and was my case this last recurrence since I have a pec flap, extensive surgery, and radiation, and it detected recurrent cancer as small as 3x7mm,, but major surgery was still needed. I believe the quote in the article was scanning was 26% , if not more, accurate.

Good luck with everything.

Thanks for your replies. I am in contact with his surgeon's clinical nurse via email which is very helpful but thought I'd post here while I wait. The last time my dad went through all this I was remote and had a newborn so I wasn't as involved to this degree. Consequently, I'm gathering some of this information for the first time and trying to wrap my head around everything. This forum and your responses are very helpful. Thanks again.

HI there... okay I gather you are saying all along - other than a chest xray he has never had a scan? I'm not a dr. but I think that normally, a CT is used as a supporting dx tool. Then often just after treatment (normally 3-6 months) a scan is done to determine effectiveness of the treatment and to see if there are any suspicious areas that require watching or action. So I am going to go against the grain here and say he should have had at least two scans. Plus it is common practice to have a chest CT to check for lung mets. Most drs. don't like exposing their patients to too much radiation. So some will stop after the first clean scan.

A ct is also often used to plan radiation and surgery.

Hopefully he is being seen at a CCC. hugs

Hi there. I'm so sorry about your Dad's recurrence. I suspect that the NCCN guidelines for post-treatment surveillance of head/neck cancer patients didn't even exist in 2006, when your Dad's first round of treatment concluded. The routine use of surveillance scans is controversial. Today, many institutions order one scan 2-6 months post-treatment and that is all many insurance companies cover. Beyond that, it's highly unlikely that your Dad would have been scanned routinely during the last 8 years unless he had symptoms pointing to a possible recurrence. That's not odd at all.