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#42153 09-12-2002 11:56 AM
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I had a stage 2 tumor on my tongue which has been successfully removed. All margins were clear, no signs of any cancer in any lymp nodes or salivary glands, yet my surgeon is very anxious for me to have radiation. "Just in case". My understanding is that once you recieve radiation in the mouth that you can not receive it again if another tumor forms. My question is why do I want to put myself through the side affects of the treatment if it isn't necessary? Any thoughts would be appreciated.

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Hi, My name is Connie and I had a stage 1 on the left side of my tongue. I had surgery to remove it. During surgery they sent two frozen sections to the lab while I was still under. When I came to I was informed that they had taken about 1/4 of my tongue. The margins were questionable, cells were right to the margin so the Dr. thought I should have radiation as"insurance". I wish I could have made the choice to have more of my tongue removed and forgo the radiation. My lymp nodes were ok as yours are. During radiation I lost 60 lbs. After two weeks I had not only lost my taste but everything tasted so very very bad. I did not loose any work time but often came home at 5:30 and went right to bed. I took about 6 months after radiation to gain any taste back ( they say about 2 months is the norm) My mouth was burnt pretty bad. The radiation killed my saliva glands and so my taste is still pretty low. I do a daily flouride treatment for my teeth and chew the biotene gum to help keep my mouth moist. If I had it to do over again I would get a second opinion. Why don't you consult with another Dr. before you take the leap at radiation. I had a ENT, a Radiologist and a Oncologist all working as a team but I suspect they pretty much all knew each other and went along with one of their decisions. Go to completely different Dr. with all of your records or find a good Cancer Center. Someone on this site can probably lead you to a good one. I have been cancer free for two years. I still cannot eat spicy foods because my tongue has never gotten back to normal. It is still sensitive. If you do opt for the radiation be patient, be sure you get good nutrition and keep a positive outlook. It will get better!! Good luch to you.


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Hi, Colorado Lass.

You've brought up a topic near and dear to my heart, because I faced (and still do face) the same dilemma. Here's the bottom line: whatever you do is ultimately a craps shoot. You gather information from as many sources as possible, and then you make a decision. But it's your decision. Don't allow yourself to be bullied by doctors or even well-intentioned friends and family members. As long as you always understand the possible consequences of your decision, simply do what's right for you.

Like you, I was diagnosed with squamous cell CA of the tongue, Stage II (just about a year ago). The ENT who performed my surgery said that he saw no purpose in putting me through follow-up radiation, which he called a "life changing experience, and not for the better". I questioned him thoroughly on this subject, because most of what I had read prior to surgery, ran completely counter to his recommendation. He said, "If you saw my patients who are currently undergoing radiation, you'd understand." I said, "I'm sure I would, but what about the cancer?"

He said that the surgical margins were clean, that there was no evidence of cancer in the lymph nodes, so I should simply visit him every 3 months for a thorough mouth and neck exam. He admitted that his approach was viewed by some as controversial. He said, "There are no guarantees. You might have micrometastases right now as we speak. They could be in your mouth, your neck, your throat, your lungs. But I have no evidence of it. So why should I physically devastate you and ruin your quality of life, simply to cover my butt?"

I was beginning to like the way this guy thought.

He then made the same point you did, Colorado Lass: you only get radiation ONCE. He said that the reocurrence rate is very high for oral cancer, especially when it involves the tongue. He said, "If you have radiation now, we've used the last arrow in our quiver." From then on, it's pretty much surgery or nothing, and surgery can be problematic once you've had radiation.

I asked him why so many of the top medical centers seem to push for radiation therapy after surgery. He offered his personal theory: medical centers treat very large, very diverse populations. Their clientele run the gamut from wealthy CEOs and college professors to drug users and street people. So, in general, medical centers tend to favor aggressive treatment regimens for all diseases. His reasoning was that they simply can't be sure their patients will ever return for proper followup care, so they want to hit them with as much as they can, as long as they got 'em. He said, "Mark, I have no doubt you'll be back here in 3 months for your checkup."

I think he sensed that I was still having a few doubts, so he encouraged me to seek out second and third opinions. He said that for every expert who recommends radiation, he could find one who would agree with his "watchful waiting" approach. So he was very sympathetic to my plight, and practically insisted that I see a radiation oncologist, so that I could hear all sides of the argument, before deciding.

So, I took his advice, and did see a radiation oncologist. She, too, was sympathetic and agreed that there were no guarantees, but (surprise, surprise) she tended to favor radiation therapy. One of her reasons: she thought the surgical margins were too small in a couple of spots (only 2 mm -- she wanted 5 mm). But she suggested that I not make a decision until she reviewed my case with the tumor board, and had spoken with my ENT. She did both, and then called to tell me that, given the particulars of my case, "watchful waiting" was a perfectly reasonable option. Once again, she said, the decision was entirely mine.

So, Colorado Lass, to make a long story longer, I opted to opt out of 6 to 9 months of hell and years of permanent damage to my mouth, teeth, salivary glands, etc. on the chance that my head and neck are not teeming with cancer cells. But I could be wrong. Or, at best, I might simply be delaying the inevitable (very possible, considering I still smoke). But anytime you buy "life insurance", so to speak, you have to pay a premium. For me, at this point in time, the cost of radiation is just too damned steep. Plus, I don't forfeit the right to change my mind at any time.

Remember, there aren't any wrong answers, Colorado Lass, as long as the answers are yours. Please forgive the lengthy response. Best wishes to you.


Mark Giles
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I think we should make Marks response a permanent part of the site. What he says is so true, and the ambiguity of the situation is frustrating. I went the other route from Mark, sugery and radiation. For sure the treatment was hell on earth. The recovery was long. There are radiation problems such as xerostomia, healing issues, and even the worst case senario, a radiation induced osteosarcoma 10 years from now should I live that long... and there is no going back to the well. On the other hand I believe that they got everything there was to get, and while I have typical "survivor/itis", life is pretty damn good. One caveate...Last week OCF lost one of its first members, Kip, suddenly to a brain tumor that no one knew was there. She had regular normal results check ups, but in an airport during travel started having a seizure. They gave her 3 days to live. Micro metastasis are not isolated occurances, and 3 month exams do not look at every inch of your body. While most recurrances happen in the oral environment, the second most likely locations for it to show up are in the aero digestive tract and the brain. Given this, while I follow a strict protocol of visual exams every 3 months, and annual MRIs and lung CT scans, I am looking elsewhere besides my mouth. I personally believe that the price I paid for the radiation and the price paid by those who elect a wash of chemo at the end, is a valuable step. But I am only a single opinion and not a doctor. Make your most informed decision and stay on top of things...the rest of your life. Brian responding from Nice, FRANCE. Back soon!!


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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A followup to Brian's comments and a clarification.

As a Stage III patient, Brian really had no choice (well, he DID, but ...) but to undergo neck dissection and radiation. My ENT says tumor board meetings are generally quiet when dealing with Stage I or III cases: the treatment recommendations are pretty clearcut, and board members tend to agree most of the time. But discussions of Stage II cases can completely unravel them, and heated exchanges are common. Stage II is a gray area, and there are legitimate arguments coming from all sides.

I want to be clear that in my previous comments I was, in no way, implying that we all have choices about treatment. This is not "Brian picks chocolate and Mark picks butter pecan at Baskin Robbins." If you are diagnosed at Stage I or even Stage II, you may be fortunate enough to get by with a relatively simple surgery and close followup ("watchful waiting"). But if you're at Stage III or IV, forget it -- watchful waiting is not an option. Brian, like many others on this board, didn't have the luxury of "choosing" anything -- his only "choice" was life itself. For the most part, it's those of us with Stage II disease (and occasionally, Stage I), who are sometimes presented with these conflicting, and often contradictory choices.


Mark Giles
Stage II Tongue Cancer Survivor
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I wish that we had found this site at the beginning of John's treatment. I don't think that it would have changed anything but the imput is wonderful. John has had radiation and chemo at MDACC Orlando. His radiation was IMRT. We are very happy with the doctors. He now has to have surgery on the lymph nodes. If we learn anything from this I hope it how precious each day is--even the bad ones. I appreciate your attitude Brian. Just believe in your course of treatment no matter which one you choose. Believe it must be right for you.
Meredith


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