I have a couple of questions that I can't seem to find answers to.

My husband is one year out of chemo and rad following unresectable tonsil and floor of mouth cancer-stage III. He is doing much better.....working everyday and slowwwwwwly gaining weight. Once a very robust 180 he lost 50 lbs in 6 months. Now he is back to approximately 140.

My questions concern remission versus local control. His scans have always been abnormal.....not able to rule out the presence of active cancer or just inflammation.

He had a PET scan in July that suggested that a larger area in and around the tonsil, along with an additional area on the side of the tongue was "hot". The tongue was a new spot and the tonsil area had "possibly" increased in size since the previous PET in January. These were evaluated by a second specialist at Johns-Hopkins and he assured us that nothing was visable or palpable and his blood counts were good. On this information, he believed the areas to be inflammation and to follow-up with more scans in Dec-Jan.

Bottom line, I guess, is how long can inflammation show up in a PET and CT after treatment is finished? We were initially told six months, but are now being told that it is a very good chance that this is all it is a year out.

Lastly, how accurate are blood tests in suggesting an active tumor? Our Oncologist also keeps assuring us that his labs are "good". Just not sure what it all means in the scheme of things. I understand there are markers that are monitored, but don't really understand the reliability.

Thank you all in advance for any information you might be able to share. You are all in my thoughts every day. I don't know where I would be without your support and patience.

Bless you all,
Mandi

Hi Mandi,

I don't have any answers to your questions. You have peaked my interest about some of your questions.

1.) Is there a blood test that will tell you if you have active cancer?

2)Can't the Doctors tell from the scans weather or not you have a reoccurance. It sounds like they have a vauge way of reading the scans.

3) why not do a biosopy of the new spot on his tongue and tonsil and find out for sure.

Why do they seem to want to under estimate any potential reoccurance?

Sorry for asking more questions but it concerns me when I read a post like Mandi's.

Take care Mandi, Your friend Daniel

Hey Mandy,
I agree with Dan...seems like they should be doing a biopsy. My husband just had a biopsy yesterday on his tongue. He felt another "strange" spot on his tongue back in his gag reflex. It took three visits to his oral surgeon for follow up to finally get a biopsy. He didn't see anything to be alarmed about and didn't really want to do anything but watch it. I kept insisting that a biopsy should be done to be sure. Seems like we have to fight for some tests and be our own advocates...something I have learned thru this.

By the way, I am from Columbia, MD. Where in MD are you from? It's nice to see another MD friend!
Take Care!
Debbie