Leslie B, I posted a reply but have no idea where it ended up.LOL. My Surgeon is 1 of about 12 that work and consult on cases. I do have a lot of faith in them after I was saved from being made an almost vegetable at WVU in Morgantown , Wva. My cancer was a 2 so I think about it from time to time.Also I got scoped for Barretts esophagus I've had surgery for a few years ago on the 17th of this month. I saw the Dr for the report today. He told me my Barretts looks really great for some unknown reason and now it isn't a scope every 6 mo. but once a year.I'm thinking the guy upstairs is looking out for me as he has for years. I've been thru the "Mill" LOL aortic anneursym surgery and all. Thanks for the interest all.

Hi Francesca,

Like so many others here, I wish there was a magic formula that could insure your cancer would be treated with a just enough/not too much magic bullet. My son, age 22, had a similar cancer, scc of tongue, T2NOMO, with partial glossectomy and removal of lymph nodes (clear). His margins are "mostly" good, except for one spot that is 3mm, that the doctors wish was 5mm.

His surgeon is positive she got all the cancer out. She recommended against radiation. She feels his age and the fact that he is a non-smoker, non-drinker could mean that his body is somehow "sensitive" to carcinogens. She says there is an increased chance (30X) that he could develop a radiation-induced cancer in the future. Also that it might be a good idea to keep radiation as a reserve weapon in case it's needed. Plus, she's concerned with quality of life issues in such a young person.

As sure as she was about this, she made certain my son saw a radiation oncologist to present his side.

He believes my son should have radiation. He says: out of 100 people who had my son's tumor and my son's surgery, 15 of them will have recurrence. But, to him, that's not the scary part. The scary part is that treating a recurrence is more difficult than treating the original disease. Only half of the 15 will survive. With radiation, only 5 of the original 100 will have recurrence.

It is a huge decision, one that even some of the best doctors in the world can't agree on.

My son opted for no radiation, but close follow up. That means driving 3 hours each way once a month to visit his surgeon. It means CT scans every 3 months. It means having a lot of faith in your doctors -- that they can spot or feel anything unusual -- in a tongue that already looks/feels abnormal. It means worrying. A lot.

Best of luck. I hope you make the right choice for you.

-darcy (Matt's mom)

Darcy, thank you very much, I wish you and Matt all the best!
I saw a third doctor just today and he confirmed that in my case radiation is not a routine option. Still, just to be sure that everything is ok at the moment, he decided for me to have a couple of post-surgery exams next week. I'm a little bit scared but I'm ok with this. Also, he confirmed the absolute need for a very close follow-up, just like you mentioned. He said: more treatments, less close follow-up - less treatments, closer follow-up. I know what that means, I know it's gonna be hard but I have no choice.

Leslie B.. No the radiologist is not from James Cancer center. He is a local but I do respect his opinion. I'l wait until I see the Oncologist at Ohio State the 15th of Oct. I have a lot of faith in this guy and he is on a team of about 12. Thanks for taking an interest. Jim

Yes, the "definitely not" part was perhaps too definitive. I do apologize. Francesca, I wish you all the best.

Luigi

Liz, was Rob staged at a stage 1 with two lymphnodes involved? That suprises me?? The new tumor I have would barely be a stage 2 but for the one lymphnode involved, which my doc said bumps it to a stage 3. I know some people will have a T1 but then have lymphnodes, which makes them actually a stage IV at times. I am just making sure I understand his staging.

Take care,
Minnie

Maybe its me that didnt understand Minnie .I got his T1N2cMO from his notes but i think i worked out his staging from this site but i also read it in a letter to our gp.His secondary tumour in the neck was 6CM but his primary in his toungue was only a few MM .I know they said they were confident of a full recovery,and that he had a 98% chance of no further problems,if he followed their regime.
I am happy to hear your thoughts about the staging

love and hugs liz

Thanks Liz, I don't know what to make of it, maybe they do it differently "over there". Would make sense wouldn't it? How are you doing? I think of you often and wonder if you're lonely. Email me personally if you wish.
Love,
Minnie