I am a 42 year old male, life long non tobacco user and I was recently diagnosed with tongue cancer. The primary tumor is on the left side of my tongue and is less than 2cm in size. I had a CT/PET scan that shows mild-moderate activity in one lymph node also on the left side. The node is not enlarged and reported as 1 cm in size. One Head and Neck surgeon is recommending excision of the tongue tumor and a selective neck dissection. He strongly feels I should not have radiation treatment at this time and should save this option for if there is a re-occurence in the future because of my age. The other Head and Neck surgeon is recommending excision of tongue tumor and radiation treatment of the neck instead of a neck dissection. He would do a neck dissection following the radiation treatment if needed in the future. Any thoughts on this? Like most of you I have read so much on the subject that my head is starting to spin and I need to make a decision soon to get a treatment started. I am seeking another opinion from Johns Hopkins Hospital in Baltimore (a couple hours away) but my appointment is not until the end of next week and I feel time is of the essence here. I may schedule surgery for the week following my visit to Johns Hopkins and can change my plan if needed.

I think it is a great idea to get a second opinion on any serious illness, even if only to give you more confidence in your final treatment decision. In your case, Hopkins, with its top-rated Otolaryngology Department, will undoubtedly help you make a choice. I know we went first to Hopkins, the ENT there suggested we might want a second opinion, we went to Sloan-Kettering which strengthened my husband's confidence that he was making the right choice.

Assume your tumor is on the outer, moveable part of your tongue and not at the base-of-tongue? The one person I know pretty well who was treated at Hopkins for an oral (outer, movable) tongue cancer had very conservative surgery on tongue only, then chemoradiation -- the radiation was with the very precise tomo IMRT that Hopkins has. The approach may not be "right for you" but I would take any Hopkins recommendations very seriously before making any final decision.

Gail

I just turned 52, and was diagnosed last march with 2 cm tumor on right side of tongue, with 1 lymph node on that side. My lymph node was closer to 2 cm in size. The doctors at the CCC recommended a very aggressive course, consisting of a bilateral neck dissection, radiation and chemo.

Note that I did not have surgery to remove the tumor. Given the small size, they felt they could eliminate it completely with radiation. This proved to be true, and I am cancer free at this point.

There are no hard and fast rules. I wanted the most aggressive treatment possible, as once it is in a lymph node, the staging goes up. Neck dissection showed minor involvement of 1 other node on the right, so I was glad I did it.

I was lucky, in that I continued to work throughout treatment, and had realtively minor impacts from the treatment. Today I am bothered by dry mouth, neck stiffness, but that is a small price to pay.

We all have to make these treatment decisions individually, but for me, I did not want to take any shortcuts, as I cannot be sure that I have another crack at this deal.

Good luck, whatever you decide. Come here with questions, as we have collectively seen most, if not all, of the issues you could face.

Basically you will be getting a third opinion and don't be surprised if you get a third treatment plan. You didn't mention if the 2 surgeons you have consulted are at the same hospital or if they are at a comprehensive cancer center.

Unfortunately there is no set protocol for the treatment of oral cancers and you are caught in a position that many members have been faced with.

Your visit to Hopkins will hopefully steer you in a direction that you will feel comfortable with. You have to go with whichever doctor helps to instill the most confidence.

Good luck with your treatment.

Jerry

Can you give us an update? I have a reoccurance and have 2 different opinion on treatment issues also.
Connie

I went to 5 different cancer docs and got 5 different treatment approaches. I settled on Moffitt's approach for my Stage IV which was no ND, concurrent chemo and radiation. So far so good.

David, we got the same treatment plan from Moffitt. Just curious if you see Trotti for your follow-ups or other team members ( McCaffrey for instance.) We opted to get treatment here as Trotti was comfortable with our RO and MO. But we definitely want the followups at Moffitt.

Bill is scheduled for CT and PET the AM of January 14th with the results and assessment by Judith McCaffrey that afternoon. I am feeling the stress rise each day closer to getting that first report.
Deb

Deb: We are waiting for a date to be scheduled for Buzz to have CT of chest and panorama (sp?) of head/neck...IMO, WAITING is the most difficult part; I'm such an impatient person anyway! Maybe this is supposed to teach me to have MORE patience?

We'll be holding our breath WITH YOU til Bill gets the ALL CLEAR!

Lois

Thanks Lois,
Oddly enough, and probably because Bill's recovery was so good and fast, the both of us have been OK with the wait following his treatments. It was the calm after the storm. But now, it is "crunch time." We have to find out if all this effort has worked...the moment of truth and I am scared to death. I keep going back to the fact that Bill took the meanest and toughest treatment they had and if it wasn't enough - so be it. But, the emotional part of me is so scared to hear that it wasn't enough.
I just hope I can hold it together on the 14th...I find myself very fragile these days...probably an aftermath 6 months of terror this diagnosis has wrought.

Hope Buzz continues to heal..he is so tough and you are too!
Hugs, Deb

Deb,

Dr Trotti was my RO and my entire Tx sans dental was done at Moffitt. I made the daily 90 mile RT and some days were painfully long. Trotti has even asked me to co teach a Colloquim on Head and Neck cancer at USF's College of Medicine Jan 24th. The audience is 1st year cancer docs and attendance is required. His office keeps calling to remind me and I told them last time to remind Trotti that he treated me for cancer not alhizeimers.

My role is obviously one of the patient's perspective where I am to give a 30 minute talk and then it's open to a 2 hr Q & A session.