Insurance vs. Doctor

I have a question for all who are having follow-ups to successful surgery/radiation/chemo treatment. My insurance carrier approves follow up PET scans every 4 months for the first year, then annually until year 5. My oncologist recommends follow up PET scan every 6 months for the first two years, then annually until year 5. So I had my first 6 month scan (CLEAR!) in Nov. 2011 and am due for the 1 year. What is your experience to a good monitoring schedule? I see my ENT twice a year for a scope in between the scans. Should I continue with a PET scan every 6 months for year 2?

Linda,

I had my first scan, a CT with contrast, at 4 months out.  After that it was alternating PET and CT every three months for the rest of the year.  I also had an ENT scope about the same time as each scan, sometimes on the same day--cuts down on the driving, and when I go to the second doctor, whichever one it is, he can show me the scan that day.

Now it's been 15 months and I'm on an every-four-months schedule.  My ENT says I may not need any more scans at all, but the RO wants them.  He says after this year, they will probably be at 6-month intervals for the following three years, 5 years total.  I'm not sure whether they will continue to alternate like they have been doing or not.

I am also having scopes every 6-8 weeks for the throat dilations.  But I don't think anyone sees those except the GI.  He would, of course, notify everyone else if he ever saw anything concerning.

Susan

Linda:

I'm nearly 5 years out - ended treatment in November 2007. For the first year, I had scans every 3-4 months. Second year, about every 5 months. Third year he put me at an annual scan.

In that first year he leapfrogged MRI's and PET scans. If a PET scan was a bit suspect he would immediately follow up with an MRI.

As far as scopes, my ENT has kept it to a 5 months apart schedule. That ended up being the most important since he picked up some osteoradionecrosis at the site of the tumor. We're dealing with that now with hyperbaric oxygen treatments.

Reading some of the posts here, it seems that there wasn't any specific time frame for scans although the first one after treatment was about 3 months out. Beyond that, it was up to the oncologist.

I would think the physician's own experience is brought to bear along with generally accepted research of disease recurrence for that particular type of cancer, its location, and it's progression when discovered. I've no doubt the general state of health of the patient is also important.

So the schedule you're on sounds consistent. Others here may disagree since they want to be exposed to as little followup radiation as possible. I'm far too curious to forgo a scan myself.

Sounds like you're doing great - wishing you many years of continued health!

- Jeff

Jeff and Susan,

Thanks for replying with your own experiences! I see my RO this afternoon for a 12 month follow up to the end of radiation treatment. My insurance has not yet approved the 12 month PET/CT scan, citing their policy of every 4 months for the first year. Common sense would dictate that two in the first year falls within that guideline! But NO . . . must see the doc first, then ask nicely for the PET, I guess. I am back to my usual activities with good stamina and energy. Thinking back on what I was feeling this time last year MAKES ME SO GRATEFUL FOR A  SUCCESFUL OUTCOME! Haven't felt the need for a thropat dilation. I do take tiny bites with plenty of liquid to wash it down and just have to accept this fate, which by the way, is better than the feeding tube. I hope you are both doing well, despite our new limitations. Jeff, I did 6 sessions of hyberbaric oxygen before my Mayo surgeon saw me -- he didn't think the exposed jawbone (diagnosed by my dentist and an oral surgeon) was osteoradionecrosis and had me stop. It ended up healing on it's own.

Linda