Sharlee,

I tend to agree with the point that Gary made about the value of a true "team" opinion vs. the individual phone conversations of 2 or 3 doctors. If your appointment with Dana Farber is for a team consultation, I would encourage you to go ahead with it. When there's a tough call like yours involved, I think it really makes sense to let the various specialty doctors sort out the pathology issues and come to an overall recommendation about what is best for you. After I had a consult of this kind, I didn't feel that the decision was all left on my shoulders -- the team told me definitely what their view was based on what they saw from my biopsy and all the subsequent tests.

While I had clean margins and no lymph node involvement, there was clearly something in my pathology reports (probably the poorly differentiated part) that caused them to push me toward radiation after surgery, which I haven't regretted.

Cathy

Gary....You ask if my "RO" agreed with the decision. I am one who did not have a team. My surgeon made all the decisions. I am sure that he followed protocols, but I didn't know then what I know now about the team approach. Sue calls my doctor "Dr. Ego."

I got nervous about the radiation issue, and I went to MDA in Houston last summer for some second opinions, and they concurred that they would not have ordered radiation, given my statistics. I felt better then.

I will only know that it was the right decision when several years have passed and I either do or don't have more cancer. It's all a gamble.

The radiation itself is quite toxic, as most radiated patients here will agree. Is it worth the assurance that you are cured?? Darned right!! But if you don't need it, is it worth it? No. Who knows? All they can do is go by the statistics and the protocols. Statistics dictated that I should not need radiation. I even begged for it, and they said that I didn't need it. My husband is a physician, and he agreed that we shouldn't undergo radiation without cause.

I know that's no help. I had a maxillary/palatal lesion that is supposed to be less prone to recur. My surgeon stated that he had been "quite agressive" with my surgery, since he goes for the cure, and he felt unequivocally that he had "gotten it all." (This is Dr. Ego, remember!) I had clear margins, undifferentiated cells on pathology, and a clear neck dissection. With those statistics, I do not fit the profile of one who should need radiation. I intend to be diligent with surveillance and hope that we made the right call.

Some people have highly differentiated cells...or un-clear margins....or positive nodes...or a tumor in an area that is more likely to recur or encourage metastasis. Those patients must have radiation to clear the area of those remaining cancer cells.

Whether or not I have remaining cancer cells is something that I don't know. I am not comfortable waiting to find out, but I have to put those uncomfortable thoughts on the back burner while being very vigilant.

That's probably no help to you at all, Sharlee.

Keep us posted. Each case is different.

Hi Sharlee,
Yep, BOT is the base of the tongue. If you have an appointment at Dana Faber, it won't hurt you to keep it. It will either confirm that this is a good recommendation or you'll get another one. There's lots of track records and clinical protocols at the stage you are at that support the recommendation you've gotten, but peace of mind is personal. I would go to Dana Faber for your second opinion.

There are so many things that all of us agonize over and second guess - and that's why you getting a chance to ask your questions to your satisfaction is a good idea. Make a list of everything you want to know about this and use it at the consult.

Remember when you are making decisions that you can only do the best you can with whatever information you have at that moment. If something changes in the future you will adapt to it. Whatever you decide will be the right thing for you.

Regards JoAnne

Sharlee,

HPV test was a good suggestion. If HPV +, chance of recurrence is less. I would GO SEE Dr. Hu or Dr. Harrison at Beth Israel in NY. They are the best H&N group in NY. They do work as a team with an Oncologist (Dr. Culliney), and Dr Urken, the surgeon.

Rob J.

Hi Sharlee: For what its worth my radiology md has inferred to me quite strongly that I do not add chemo to my bot treatment. However, he said that officially he must recommmend it to avoid the potential for future law suits. This reasoning I think is why your md's won't make a firm decision. I suggest you get a second opinion to help you make the decision. It's your life. Good luck. Ed

I have an apt @ Dana farber wens the 14th .....Then after that I can make a decision and move forward reagardless of the decision