The PET scan showed that the cancer is localized to the right tonsil area and 2-3 lymph nodes adjacent to the right tonsil. It is possible that the cancer has spread beyond the tonsils to tissue in his mouth/tongue. The good news is that it does not appear to have spread anywhere else in his body.
He is considered to have Stage IV cancer. (Stage I is the least severe; Stage IV is the most severe/furthest along.) The doctor is electing to do a combination of chemotherapy and radiation. No surgery. The doctor feels that surgery is contraindicated for two reasons. First, surgery to that area would necessitate also taking tissue from the base of the tongue and the soft palate. This has a high probability of morbidity, i.e., causing damage to his speech and swallowing. Second, removing tissue would traumatize the area and interfere with the effectiveness of radiation treatments. Thank God Jason didn’t have the tonsillectomy like the other doctor prescribed.
He will be undergoing roughly 6 weeks of radiation and chemotherapy, administered simultaneously. Radiation treatments are daily (except weekends) for the entire six-week period. Chemotherapy is administered once every 2 weeks. Jason will need to be off work for 10 weeks or so because of the effects of the treatments. He is having a feeding tube put in today because the combination of radiation to the throat and the effects of chemotherapy will make it difficult for him to eat.
The doctor says that we are trying to cure the cancer, not just treat it. If Jason had the tumor only in his tonsil (and not also in his lymph nodes), then the doctor would put his chance of survival at 85-90%. Because it has spread, the chance of survival is roughly half that. The doctor said this does not mean a 45% survival rate, but rather double the chance of NOT surviving, i.e., 70% chance of survival. Don’t ask me, the math doesn’t add up to me. The doctor encouraged us to use the internet to look at studies, etc. There are a couple of online papers discussing this type of cancer and they put the 5-year survival rate for Stage IV cancer at 30%. Jason is young and otherwise healthy, so that works in his favor. This type of cancer strikes mostly men (3-4 times more than women) and mostly those in their 50’s or older. Maybe the statistics include a lot of men much older than Jason. Also, administering chemo is relatively new, so maybe that gives him a better chance.
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Hi. I have been treated for Tonsil cancer since last January, and might have some insights. One thing that is very important: It is a rare form of cancer, occuring only in 5% of cancer instances. That's why it is vital for you to ensure that your radiation oncologist is well experienced in Tonsil cancer. Mine wasn't, and I think I may be suffering a bit more than I should have.
Also, I am surprised at the course of treatment (though I shouldn't be; all oncology professionals will tell you that every situation is different and everyone is different).
And don't dispair on the StageIV designation. It was my understanding that StageIV merely means that the cancer had spread from its point of origin. In my case, it spread from the tonsil to one or two nodes on the other side of the neck.
I hope to hear from you, and wish you all the best. I don't check my gmail account much, so reply to esripvw at aol dot com. I live in New Hampshire and winter in FL.
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