Thursday, March 6, 2008

Oncologist Revals Another Side to Oral Cancer Treatment

I had not talked to the radiation or chemotherapy Doctor when I had decided to do the robotic surgery as previously described in my earlier posts. I only had the information the original ENT Surgeon had given me. That information was not complete nor totally correct.

He told me that I did have a choice of either radiation and chemotherapy at high doses, or, if that did not work, then I would need surgery and then more radiation and chemotherapy at much lower doses. Incorrect statement. He also told me that If I elected to do the Radiation and Chemotherapy first, the chances were about 50-50 of needing surgery afterwards. Also not correct. The quality of life was not explained well after surgery either. Fact is, it poor. Why? Because of the resection of the back of the tongue. In my case the lesion is on the left side at the base of the tongue. Way back where you can not see. On the lower end of the downward side, close to the voice box. They would re sect that and surrounding tissue for the margin. Margin meaning, removing extra tissue around the cancer spot to insure all of it had been removed.

What the tongue does and how important all that surrounding tissue is to things we all take for granted, is crucial. There are 6 cranial nerves and 25 facial and oral muscles that work together to able you to swallow. Opening your jaws also has many oral muscles and tissue to consider for it to open and close. More goes into it that you realize. It is very complex and intense. ( Surprising Huh?) Even having my tonsil removed and that surrounding tissue removed, has affected the way I open my jaw (it will not open 100 % all the way) and caused what is called nasal regurgitation. ( Sometimes when I swallow, a little bit tries to go up through my nose or nasal area. As that tissue heals, I may regain what has been lost, but I will have to see. But when resecting the back part of the tongue, it will not grow back. They would have to reconstruct that with skin from my wrist, shoulder or where ever. Yes the graft would take, but....would not be able to fully replace what God gave me. Hence, it is a life of soft foods, sauces and gravies. That is the case no matter which kind of surgery I would have. ( The original free flap or the TORS.) The robotic or TORS was just less invasive to accomplish the same thing.

Why I did not talk to the Cancer Docs right away? Well....I took the ENT's word for it all. After all, he IS the professional! Big mistake. Now, I talked finally to the Cancer Doctors and here is what they said. The Radiation Doctor said, that it takes a 7.5 week treatment plan of radiation mixed with Chemotherapy. The Chemo Doctor said they use a newer drug for the squamous cell now. It is called Herbatux. It does not cause nausea or vomiting nor hair loss. It has a lot less side affects and it actually blocks the pathways that the cancer cell uses to grow. It alone can reduce cancer tumors by half or more.

So, the radiation takes about 6000 rads to kill the cancer cell. If I have surgery first, it will take 7-8000 rads to kill the same microscopic cell. I forget the exact reason why, but it did all make sense. After this is all done, I will have the same quality of life. Of the 50 patients he has treated in the last year, only 3-5 of them needed surgery afterwards and for different reasons. That is a low percentage compared to 50-50. The Radiation will be every day, five days a week for about 7 weeks. Chemo...not sure how often, but that will be started next week even before the radiation starts. The worst I will feel is how I felt after my tonsil surgery. I can handle that. He uses very localized beams to do this. The one saliva gland will not be affected, and the other will, but he will use a lower dose beam on that one and give me a drug to stimulate it to produce saliva. He said that it is a 50-50- shot of being normal again. BUT it can and has fully recovered with other patients. ( That used to be another risk. Dry mouth.) I can also get me a plate to wear at night to assist the one good saliva gland to keep from getting dry mouth as well.

Patients have been treated both ways. Surgery first then radiation and then radiation first with no surgery. No matter which way you go, the end result is the same in his experience. One way is not better than the other except for two things. One quality of life is better with no surgery. IF and I say IF surgery is needed afterwards for some reason, then surgery is a bit harder because of the radiation treatments received. ( bleeding is worse and extra.) One thing I can do to reduce the need for surgery afterwards is to have my teeth removed before radiation starts. IF my teeth need pulled after radiation, I stand the chance of the bone dieing, therefore needing a bone resection and that is hard both on the surgeon and me. So I eliminate that risk factor by having all my teeth removed first.

I asked him why the ENT did not tell me all this. He knows this Doctor and he is the best when it comes to Microvasular Free Flap surgery. But, he does not know all of the fact with all of the patients. He only knows what oncology sends him. He also, is of coarse, bias towards his field, as is anyone. I added the comment, "And wants his dollar too." Well, I got a big giggle from the radiation Doctor from that comment. He then said in a jovial way, well....I am getting your money no matter how you go, so that is not a concern. He said my job is to inform you as best I can so you can make an educated decision. I asked him, if you were me....he spoke right up and said, I would decline the surgery! Both radiation and chemo has come a long way in the past 5 years. He said, now 5-10 years ago, I would have had a different answer. Bias towards his field? Perhaps, but I have wieghed my options, which is what we all must do.

So I start Chemo next week and see an oral surgeon today!


Sharon said...

Isn't it amazing in this day and age, how much is still left to each individual to determine what is the best course of treatment. For those who have the intellectual resources (brains !) and the courage to ask questions and challenge doctor's recommendations, the final course of treatment is usually the best. Makes you wonder about those who don't. How many people like older folk or those less intelligent or resourceful just do whatever the first doctor says. In my own limited experience in hospitals, I've also seen that it is the patient's responsibility to be sure all is done in his or her own best interest.