Hi, Eileen.

You brought up a good point, which I hadn't thought through fully---neither center has completed its "full" board review. (Why do those reviews take so long?) I hestitate to mention the name of the cancer center I referred to in PA, because I'm concerned that my friend (who accompanied me to the appt) and I may have misunderstood the doctor, and I don't want to speak poorly of this center that was ranked #11 in the entire nation. But as long as you know that I'm admitting that we may have misunderstood what the doctor said, I'll share with you that it was Fox-Chase. I'm highly impressed with the facility. The doctor who I spoke with is a radiation oncologist, and what my friend paraphrased that he had said was, "Radiation cannot make up for inadequate surgery." This addressed my situation of my first tongue cancer surgery pathology report coming back to show that the margin around the tumour at one point was less than 1 mm. I have differing recommendations---either to go back in for a second surgery (with a neck dissection as well), or to not have surgery & just do radiation. Sloan-Kettering gave a preliminary recommendation of radiation only (although I won't hear their final recommendation until August 6th), and Fox-Chase gave a preliminary recommendation of surgery only (although I won't hear their final recommendation until August 13th). Waiting is difficult, and in fact, I'm concerned about the timing, should the course of treatment be radiation, because my first surgery was peformed on June 22nd, and you shouldn't wait too long after surgery to begin radiation? Is that true?

Some here have had radiation and chemo only for treatment of tongue cancer. So I am not surprised that MSKCCC is recommending radiation only. It seems logical what the RO at Fox Chase told you as well about radiation not making up for inadequate surgery. But what it boils down to is that you have to decide which weapons to use in your fight - not an easy call -and no easy choices.

The good news is that this really isn't a recurrence, just margins that are too close.
Have they in fact determined that you have lymph node involvement? Or is the radical neck disection precautionary?

If it were me and I had tongue cancer I would probably be going with all three, knowing how aggressive tongue cancers can be. But since you have already had surgery, would the radiation and chemo be enough to clean things up? They can always target various lymph nodes with radiation like they did to me as well.

If you read through the oncology practice guidelines there are always some areas where the experts disagree. You will have to go with your gut here.

To Deni:
Post radiation treatment is usually in the form of "salvage" surgery. In some cases radiation may be repeated, if it was IMRT or if the "boost" wasn't administered the first time. Chemo is still not the panacea for H&N cancers.
If you are not getting treatment at a comprehensive cancer center, then I would find one and have them review your file and get a second opinion. By the time recurrences are discovered thousands more cancer cells have been put in the bloodstream increasing the risk of distant metastesis. It is far better to kill the cancer the first time.

Bob,

I'm so sorry this is so long, but I think perhaps you can relate to my situation. Mine was on the mid-tongue:

My first surgery removed a tumor of 1.5 cm x 1.5cm x .6cm. This was before they knew it was cancer - they thought it was just an ulcer - so I didn't have clean margins.

This is what DF (Boston Hopsital) said about lack of clean margins and going in again for me:
"Once a tumor is removed from the mouth, the remaining part can dramatically reduce itself (up to 20%). It

I love your sense of humor Sabrina. No matter what is going on it's best to find a giggle somewhere.
Sounds like you had very good care. My brother and sister-in-law live in Boston and they wanted me to come there for treatment. If I hadn't loved my doctors so well and felt so safe with them I might have considered it.
They live in South Hamilton now but spent years in Rockport. I spent summer after summer in Rockport during the 80's, what a beautiful place.
Take care,
Minnie

Hello Bob
It was great to meet you yesterday and share our stories.
I hope I didnt overload you with too much information about this cancer stuff!
Sometimes we gather as much information as possible ,talk to as many people as we can and go onto websites in order to feel assured we are doing the right thing.
You get overloaded with information and sometimes it can cloud your perspective which is your survival.
We all live in fear of our cancer coming back tomorrow and we should trust and have faith in the doctors who are saving our lives. You are going to one of the best hospitals in the country and it doesnt get any better than that.
I know you are scared and believe me I was too but the bottom line is that it will prolong your life.
I am sure you go through the "Why Me " and to a certain extent I still dont believe that I have cancer only the scars show that I do.

Dont forget you can call me ANYTIME to chat

God Bless you and keep smiling

Bob