I introduced myself a few months back, had a partial glossectomy due to the tumor on my tongue, the depth was 5mm so they did a nd early march. 73 lymph nodes removed, one positive at the IA level. No radiation. this concerned me but on we went. A few weeks before my 2 month follow up I found a lump in my clavicle (sp). Head and neck surgeon ordered a CT and that showed that the node had grown from 1cm to 1.4. By the time I went back to surgeon 2 weeks later I had discovered a spot on my tongue again. So went to see the surgeon and he said we needed to go back in and take the spot off the tongue and the node on my clavicle. I asked, arent we going to biopsy first he said no given what i'd been going through....ANOTHER surgery, my third in 5 months, he said the tissue on the tongue looked healthy and the nodes were shrinking, had I been under any stress????? YA THINK?..anyway, they took out another 15 nodes at the level 5 area and all biopsies came back clear (lesson here,,,,no surgery w/o biopsy for me ever again!) Now once again, he says we watch and see no rads.

My question here, I am at the CCF in Cleveland, and really want to get another opinion. Like my surgeon and everything but shouldn;t I be speaking with either an oncologist or a RO? The only dr. i've seen is the head and neck and his band of merry interns. he says he takes me to the tumor board and if i really want to talk to the ro he'll set it up. Me, I'm thinking a second opinion at another hosp.

Anyone out there with a suggestion at maybe UH in cleveland. It seems that this doc is just planning on cutting me till he cant cut no more..

thanks for any help!

Paula

I would get another opinion. I got 5 before anyone touched me and I'm glad I did.

I think you are right on target with your opinion. Get to talk with people from other specialties, particularly radiation. Whether at that institution or another, it will give you a new person's perspective from a different discipline of treatment and that would be a good thing. I never have been a big fan of single modality treatment given what I have seen on these boards over the years. But a new facility opinion may be different. He may be the head cheese there and everyone on the tumor board defers to his opinion. Another facility might give you a fresh set of ideas all around at their tumor board.

You need to get another opinion(s). Radiation is not fun to be sure, but it can treat a much larger area without a total loss of heathy tissue.
Brian is right on with getting this (opinion) somewhere else done, just to be sure that you avoid ego stuff.

Markus

I would contact the Arthur C James Cancer Hospital & Solove Research Institute at Ohio State in Columbus for a second opinion. They are ranked tops in Ohio, and among best in country, especially for Head & Neck. Dr Schuler, who has been the medical lead of the entire institute, also leads the Head & Neck program.

Pookie,, you sound a lot like you are having the same problem as I did. Told I didn't need ards or chemo . Local Dr said the margins were 1.5mm and way too close. He wanted to do the rads and chemo, but my Dr at Ohio State said I was free of cancer, Oh yea, within 4 to 6 weeks I was having the same problems as yoiu are. The Dr at Ohio State did more biopsies and another surgery on my tongue then said I should have rads and chemo. LOL Had to have my teeth removed, then the rads and chemo, then Radiation Seed implnts in my tongue. I had the implnts the 29th of Feb and I don't temember much of my being in the hospital for 8 days. I almost ended up in a rest home to come out of my deep sleep. Got lucky and came around the next day. Dr said I was a miracle man for snapping out of it. WHEW.. Go for that 2nd opinion and the hell with what anyone else says they think. Look out for you and your health. The implnats are worse than than surgery.

Sorry I don't type so good LOL

You need a second opinion and you should be seeing an RO and an MDO and maybe even an ENTO who know what they are doing. This is your WAR and you need to take charge and set the direction of attack with proper guidance! Bob

Paula,

I went to University Hospital in Cleveland and I am very satisfied with my treatment. Let me know if you would like my ENT's contact information.

Hi Paula,
Please get yourself to CCC as soon as possible. This disease is not forgiving so the sooner you get an appointment the better. Most centers will give you an appt within a few days. Get your records together and go. You want the best treatment possible.

Take care,
Eileen