It's Time For Some Questions

The dental oncologist is the first medical person I've met that I don't trust. The meeting with him went poorly. It was all about how much money I'm going to spend with him, how he's going to charge me, and some really bad news about the rest of my life. Of course, the rest of my life will be much worse if I don't throw a bunch of money his way.

What I don't understand is that in all of my research and all of my medical consultations up to this point, why have I never run into all these lifelong problems? How did some major quality of life issues get ignored for over two months?

The type of radiation I'm getting is gamma ray. That's the most carcinogenic "stuff" known. It's what causes cancer in victims of radioactive fallout. I'm not supposed to worry about the cancer risk, because the beam of gamma rays is focused tightly on a specific area. There's virtually no danger of gamma ray exposure anywhere other than the target area. I still have to be monitored the rest of my life for cancer in the target area. The entire group of doctors keeps forgetting to mention that until I bring it up.

That should be enough background to cover the story from the dental oncologist.

My saliva glands will be killed by the radiation, resulting in difficulty tasting, chewing, and swallowing. The loss of saliva will remove my body's natural defenses against tooth decay. It appears I will have ongoing dental problems the rest of my life or until all my teeth rot out, whichever comes first. If any of my teeth decay and have to be removed during the course of the radiation treatments, it can be up to a year before my mouth is healed well enough to be fitted with any false teeth. Remember this bit about the sore mouth. It comes up later.

The muscle I use to close my mouth will be scarred by the radiation. That muscle has to stretch when I open my mouth. The scarring will make opening my mouth rather painful and can result in permanent inability to open or close my mouth. There is a device I can buy from the dentist and a series of painful exercises I can do with the device that will minimize the chances of that happening.

There was more, but by the time I heard that much, I had some questions. The first was about killing my saliva glands. The answer was that the radiation would kill them. Everything I heard was that the saliva loss was temporary. No, the saliva loss was permanent. One saliva gland is on my upper jaw, was that one going to get killed too? Yep, count it as gone.

There was no point in pursuing that line of questioning. I got told my saliva glands would die and this doctor confirmed it twice. Once with the question about permanent saliva loss and once with the death of my upper saliva gland.

Remember what I said earlier about that targeted beam that only hits the bad spots? There are 6 saliva glands 3 on each side of your face. They range from just behind your chin to just in front of the middle of your ear. Either that target area isn't really tiny, or I'm getting lied to about the permanent damage, or my target area is "everywhere" since there's no currently identified location that needs radiation.

The scarring of the muscle is another clue. I checked where there could be a target that would nail a muscle and even a single saliva gland. I found that. It's in the area where the tonsil used to be. That tonsil is gone. The radiation oncologist thinks that was the undocumented source of the cancer. The surgeon disagrees. There was not a trace of cancer found in that area that wasn't the easily identifiable lump.

If the target is the former tonsil, how did that become the target? Is it the radiation oncologists' hunch that determines the target?

My mouth is going to be so sore from the radiation that I'm forbidden to drink orange juice (because of the acidity) or eat corn chips (because of the possibility of poking and damaging a sore spot). The dentist wanted to schedule a deep cleaning of my teeth. That's one that goes into the gums. He gave me the schedule for that. I told him that was during the time I would be having my radiation treatments. He told me that was okay - it didn't cause any problems.

WAIT A MINUTE! My mouth is going to be so sore that eating a corn chip is forbidden, but digging into my gums with a metal cleaning tool is okie-dokie? One of those two has to be wrong!

The list of life-long problems from the dental oncologist includes: No alcohol or caffeine (dries the mouth too much), no fruit juice (the acid attacks the teeth), limit eating to foods with sauces or gravies, no spicy foods, no acidic foods, etc.

The literature for the device to exercise my jaw muscles mentions that some people who haven't used the device have lost the ability to communicate orally. Give me a stinking break. If that was a realistic expectation at even the lowest possible level of occurrence, that would be all over the medical literature, not just the sales literature.

I'm considering canceling the entire radiation therapy. There's no identified target for the radiation. The side effects are brutal. I've hit the point where I'm clearly getting bad information that seems more directed towards my purchasing medical procedures than towards my long-term quality of life and well-being.

I'm getting information on the prognosis of people who have not had followup radiation after the type of cancer and surgery I had. I've found several sources, including the Mayo Clinic, who do not use radiation in my situation.

My surgeon said that if I elect to skip radiation, and if the cancer returns, he could always go back in, cut it out, and then I'd be exactly where I am today. That sounds like a decent option.