Cannot seem to end this nightmare!

June 26th had 1st PET scan post treatment and RO Dr saw an "indication". RO Dr showed PET to us and there was small bright colored dot on the right side. However, ENT looked at this PET scan and thought it was too soon to worry, maybe false positive?

Never the less, Pain when swallowing food or especially drinking water kicked up a marked amount the next week and progressively got worse. ENT opitcially looked down the scope and observed inflamation.

2 weeks went by and he looked again and saw more inflamation and mucosis (spelling?) white areas poopping up. He ordered a new PET.

8-14-2012 PET Scan results came in, RO called to tell us with a larger area of "indication" pretty much the same footprint as we saw before treatment.

RO said my husband cannot do anymore RAD treatments. That opition is gone. We need to see the ENT this week, order a MRI and I think he said another laryngoscopy with Biopsy.

Cancer area is called Vallecula which is area behind & surrounds the epiglotis.

My husband is a professional clarinet and sax player that went back to work 3 weeks after last Chemo/Rad. I thought the inflammation and pain came from playing...he says even when he stopped playing for 7 days the pain got worse.

Has anyone had inflammation & pain and so on and did a biopsy that came out ok?

Scar tissue can be painful and cause issues after going thru treatments. PET scans are known for false positives so dont get too upset about the results. False positives very common. A biopsy will tell whats happening. There are several members here who have had radiation twice. A second opinion at a cancer center would be a very good plan if it would turn out to be cancer again.

Best wishes!

Best of luck... Hopefully it's not cancer... Blessings to you..

So your husband went back to work playing his instruments 3 weeks after getting done with treatment, which would certainly put some stress upon the radiated area (not saying this is all bad, just being realistic), and now he is experiencing pain in the area? I would think he would have some pain. And this is the area that saliva accumulates (vallecula) & he probably doesn't have any saliva to speak of, I'm guessing. Probably it's a little hard on his throat right now.

I know you said the pain got worse when he stopped playing, but pain is funny like that when you don't have something else distracting you.

I guess with just a PET scan to go on & so soon after treatment I wouldn't panic yet. Is he being followed at a place where they treat lots of head and neck cancer patients?

Anne

I have endured three rounds of radiation, the last two within six months of each other. It can be done.

The last time around I tried desperately to find a surgical solution, no luck. Three of the four CCC's I saw said I was terminal and could not receive additional radiation or surgery. In this game you take what you can get and I took additional radiation as it was the only option on the table.

The point is that you get as many opinions as you can before making your decision regarding future treatment. By the way, as others here have said, having a PET light up after recent radiation treatments is not unusual and can be the healing process in action.

Hopefully the biopsy will come up negative. I have all kinds of painful areas that give me trouble day to day, but my prior experience tells me to wait before panicking as radiation treatments take a long time to heal and painful areas are par for the course many months out from treatment.

You are doing the right thing by being proactive and having the doctors keep a close eye on this issue, so keep up the vigilance and good luck with the biopsy.

My doctor has sceduled a Biopsy for August 31st.

Well, at least that's not too long to wait. I hope that you are able to do something to keep yourself busy in the meantime - waiting is the worst.
All the best,
Maria