Hello everyone,

As some of you might recall, I'm 34 years old and was diagnosed with a stage 1 SCC to the tongue late December. I am being treated at Sylvester, a CCC in Miami, FL. On January 10, I had a partial glossectomy and a modified radical neck dissection.

The original pathology report came back clean. A second pathology report revealed a microscopic speck of cancerous cells in one of my lymph nodes. My doctor recommended radiation, although reluctantly. I went on to see a radiation oncologist (who also did not seem convinced I needed radiation, but was going to go ahead and treat me). I was ready to start radiation treatment on Monday.

Tonight, however, I had a long conversation with my doctor and there has been a recent development. My doctor (who I'm told is considered to be one of the top head and neck specialist in the country) has been discussing my case with other top doctors in Europe. These other doctors advised my doctor that radiation treatment was unnecessary in my case. Basically, the studies that exist (about people with microscopic cancer in one lymph node) are inconclusive with respect to whether or not radiation is warranted.

After telling me all this, my doctor confessed that his recommendation might have been overly aggressive, and he even provided the background of why he decided to recommend radiation. A couple of years ago, he had a young patient who came to him with an early cancer to the tongue. The small tumor was taken out and nothing else was done. Soon after, the cancer recurred and the patient ended up dying. Understandably, this had a profound effect on my doctor and he obviously does not want this to happen again.

At the same time, he was very blunt in telling me that if I don't get the radiation, I have about an 85 percent chance of being fine (i.e., I would have about a 15 percent chance of recurrence). If I do get the radiation, my chance of recurrence goes down by about 7 percent (i.e., my chances of recurrence after radiation would decrease to about 8 percent). He then went on to tell me about the negative effects of radiation: pain, dry mouth, losing my teeth, difficulty eating, etc.. some of which might even be permanent.

At this point, I'm once again totally confused. I'm not sure if a mere seven percent improvement would justify the effects of radiation.

I've learned that some of the most aggressive tongue cancers that have been seen recently are among young people who have never smoked. I smoked for about 17 years and despite by unusually young age, my doctor tells me that my cancer did not seem particularly aggressive.

Of course, he has not exactly discouraged radiation. He is just pointing out that the decision of whether or not to get the radiation is not as clear cut as I had thought. Ultimately, of course, the decision is mine.

What the HELL should I do? What would you do?

I do plan to get a second opinion. I'm considering either Sloan-Kettering or Anderson. Which one should be my top choice?

Any input will, as always, be greatly appreciated.

regards,
Gino

Dear Gino, If I were walking in your shoes, I would get the 2nd opinion ASAP, from either of the above CCCs- and if you have read much on the site, you know how people here feel about statistics You are awfully young to have to go through this. I hope you have a good support system.Take care. Amy

Gino,
that is a tough choice. Possible 7% improvement in 5 year survival. With 85% already in the bag. Plus you're already at a CCC, getting expert advice and you had early staging. My MO basically told me the same thing - these are all of the weapons in the arsenal and I have to choose which ones. I read up on it, got lots of opinions and let my intuition take charge.

With radiation they gave me an 80% chance of 5 year survival but my staging was more advanced.

I am sure that you will get a lot of feedback on this.

Hi Gino - Of course whatever you do is a very personal and very serious decision but, from a statistics perspective, my husband and I both would see 7 percent better chance as pretty significant. I know when John's doctors talked to him about adding chemo to the radiation they cited a solid 8 percent greater rate of a positive impact as their rationale for doing chemo plus radiation.

As my sister-in-law, who's head of medical research at a university in Australia pointed out, 8 percent means 8 more people out of 100 do better with chemo and radiation than radiation alone at my husband's stage of tonsil cancer. And, she said, one of those people might just be John.

Our motto was "blast the bastard" with everything possible. Of course he was diagnosed at a much later stage than you.

Mary

Gino, I personally would not take the chance. If it is in your lymph nodes, cancer can set up shop anywhere in your body, although I believe lungs, liver, and brain are the most frequent sites. I had rad and chemo. I did not have a terrible time for more than a couple of those weeks. I can spit. I believe radiation saved my life. My non-medical recommendation is to hit this terrible disease with everything available so you can improve the odds of only having to deal with it once.

That said, we will support you in whatever decision you make.

Hey Gino,

This is one of those choices I am glad I didn't have to make. I support you 100% in the avoidance of radiation. My doctor said I could, but he wouldn't. Tumor board said no radiation. Then this young guy from Miami comes on 3 years after my surgery and tells his story of 2nd pathology of the slides. BIG DOUBTS enter briefly. I will tell my doctor when I see him about the study you are participating in. I think he would vote for me to be in the control group, no radiation.

Like my name says, I am living in paradise, life to the fullest and EVERYTHING in my life is different post cancer treatment. I consider myself one of the lucky ones, time will tell if I am. The fact of the matter is that if it does come back, I will not beat myself up over the choice I made but face the next step in same way I did the first, head on, eyes wide open (behind my always optomistic) rose colored glasses and beat it again.

Sincerely,
Lisa

Gino,

I agree with you about getting a second opinion from MDA or MSK -- this can be a tough call when you're at Stage I with what looks like a pretty good chance of survival without radiation.

That being said, if you get input from another team that suggests radiation is warranted, try not to be put off by the list of "negatives" you heard from your doctor. Yes, there are a number of common side effects that often go with radiation, but they're not automatic in all cases. (I still have all my original teeth, and have gotten back quite a bit of salivary function, even though I had radiation years ago when there was far less that could be done to alleviate dry mouth.)

Please keep us posted on what you find out.

Cathy