I have had my surgery and the Dr. said he got it all. Now he wants me to go thru 6 weeks of radiation. I am just now healing pretty good and feel much better. I have been told some herinious stories about radiation and am very worried about doing it. Could anyone comment on how it went for them. The left bottom of my mouth is numb from surgery, my tongue and bottom teeth especialy. It is my choice as weather to have it or not. Thank you.

Roger:

Your previous posting on this topic ("After Surgery") got moved to the "Medications, Treatment, Procedures" thread. I know there are several people who have responded.

All the best,
Leslie

Roger-
Did you get a second opinion before you began treatment? If not, it would be a good thing to get one at a major cancer treatment center.
Radiation is different for everyone and yes at it's worse it can have unpleasant side effects. You get through it and as many have said- You really get one good shot to wipe the cancer out- My husband was told that his treatment team was declaring WW 3 on him. He had induction chemo, chemo and 7 weeks of daily IRMT. 10 months after finshing treatment there is no sign of cancer- we will live with the risk of reoccurence every day in the new normal- We also know -he did all the treatments offered. Surgery wasn't reccomended because his cancer was poorly differentiated.
Caregiver to Gil, dx 11/05,T2N2b,M0, Stage 4 BOT,Rt Tonsil, 2 nodes in neck, finished trt 3/12/06

I have thought a long time about whether or not to express myself on this subject. So much needs to be considered when treatment modalities are determined....size of tumor, location of tumor, length of time it has been there, margin clarity, node involvement, differentiation of the cancer cells....All of these things are determining factors in whether to have surgery, radiation, chemo, or a combination of all of them. As so many people have said, each case is different. You might read someone else's entry here and say, "Oh, this person had radiation; I didn't have radiation and maybe I should have," and you will begin to doubt the treatment decisions of your physician. You might be ignoring the fact that the person in question had poorly differentiated cells in his tumor, while yours were well differentiated....or that he didn't get clear margins in his surgery and you did.....Take all comments with a grain of salt.

Bring ALL doubts to the attention of your physician, because you need and deserve to have peace of mind about your treatment. I almost begged for radiation, but my doctor said that I did not need it, and that the statistics and protocols did not dictate radiation for me.

Does it make me nervous to not have had all possible treatments? I must admit that it does, to some extent. But as my husband says, if you have heart trouble and your doctor says you need a stent, you don't ask for open heart surgery, or beg for a heart transplant. You have the treatment that is appropriate to give you the best overall chance for good health.

I write this only because I know that I am uncomfortable whenever I read of someone with my same diagnosis...T2N0M0.....that had radiation when I did not. Those numbers, however, do not take everything into consideration.

I just urge everyone to write from the heart....as you always do....and to say anything that you feel is helpful to another person. But we all have to remember that each case is different. Knowledge is POWER, and we each need to arm ourselves with as much of it as possible, but another saying is, "A little knowledge is a dangerous thing." We have to admit that we do not know enough to make these huge decisions on our own, and that we must get as many opinions as we feel the need for, listen carefully, participate in the decisions as much as is reasonable, and then trust the caretakers that we have chosen. We have no other choice.

I, for one, was so uncomfortable with the decision not to have radiation that I went to MD Anderson for some second opinions, and they agreed that they would not have recommended radiation for me either, just as my surgeon did not. If we had radiated, what would we have radiated? My tumor was on my maxilla and my palate, and with these cancers, clear margins and negative nodes usually means that the tumor is gone---statistically. Will I develop another primary? Who knows? Where will it be if it develops? Who knows? Will it be soon? or in ten years? Who knows? Would radiation now prevent that? Who knows?

There are no guarantees with this disease. Get a second ...or third...opinion. Be prepared to ask questions and insist on clear answers. Make your decision, and then don't look back.

Keep us posted.

Roger,

I went through the same thing after an 11 hour surgery and which included removal of the tumor on my tongue, a full neck dissection to remove the lymph nodes in my neck and 4 of 6 saliva glands. I was in no frame of mind to hear that they wanted me to also go through 6 weeks of radiation treatment. But after talking it over with my family and getting a second opinion I did it and I'm glad I did now. I've been cancer free for almost 3 years now.

The radiation treatments were no problem. Some of the side effects during treatment were unpleasant just because it was targeted in my mouth. You will not want to eat much and will be reduced to a soft food diet for a while but it's really not that bad. I went to work everyday during the treatments. Make sure that you get proper medication for the discomfort (I had percocete and an oral rinse that worked very well).

I can honestly say that I have had no lingering effects from the radiation other than dry mouth (which I would have probably had anyway) and slight taste loss. Neither of which has presented any real problems. I do keep a bottle of water with me most of the time for the dry mouth.

As for the numbness from the surgery, I wish I could tell tou that it will go away completely but that hasn't been the case for me. It's much better than it was after surgery but there is still numbness in parts of my neck and on my tongue. It's way batter than the alternative however and it's not that big of an inconvenience.

Good luck and feel free to write me.

Rob

Roger,

You are getting some wonderful suggestions here, as always the members support and suggestions can be a great help in making a decision.

I would especially like to comment on August's post. Being in a similar situation as she is in, having had only surgery, this is a topic that is very important to me. August and I have had many discussions about this very topic in our private emails. I particularly like her husband's analogy.

No matter what you decide to do, you have to be comfortable with the decision. You will drive yourself crazy if you're not convinced you are doing the right thing.

Rob, congratulations on how well everything turned out for you. It's great to read success stories like yours.

Jerry

Hi Roger.

I had my tumor removed 10/31/2006. I was diagnosed with mucoid epedermal carcinoma of small salivary gland. My tumor was slightly over 2cm and I was told it was low to intermediate grade. They called it a T2 because I had some perineural involvement inside of the tumor. T2NOMO with clear margins, tumor board met, the radiologist oncologist was the only one who really wasn't for radiation but said he would treat if the surgeon was at all nervous about not treating. They said I was in a gray area as to whether or not to treat since this type of cancer doesn't usually spread or invade other structures. Big word USUALLY , since I already have a rare form of cancer. So,just for random statistics they would say 85% of people like me would be cured with surgery alone but they are treating me incase Im in that 15% that wasn't cured with surgery alone. Whether there is actually cancer cells there microscopically or not, no one can say. I decided to go with the radiation and kill any cancer cells that may or may not exist with the radiation. It wasn't an easy decision, but if it buys a little more insurance to keeping the cancer away I took that policy out. I have 13 treatments left and it hasn't been easy. I have no taste, mouth sores and right now suffering from vommitting and nausea ( think that might have been caused from the pain killers). Anyhow, whatever decision you go with you have to hope/know it's the right one for you.

Roger
My advise is to get two very good cancer centers on the method of treatment. I did and they both told me the same thing that radiation was the best for me. Actually I didn't even need surgury which the radation took the place of. the radiation was tough but not intolerable. Beleive it or not the 6 weeks goes by fast. The first 2 weeks is like a non event and the 2 weeks after it stops are the hardest. The side effect are minimal, I have some loss of saliva, a little loss of taste, potential for added tooth dacay which can be avoided with good care and loss of my thyroid gland which 20% of the population looses anyway and I take a very simple cheap pill for replacement. The bottom line is I know the radiation killed all potential cells that could of spread in my neck or lungs and I here 3 years later with 99.999% assurance from my doctors I have beat this. Now of course I can get any other typle of sickness like anyone else but I beat this!

Thanks to everyone who posted a reply, they were very helpful. I have decided to have the 6weeks of rad. I will start about Feb.5th. Now I am asking that anyone with suggestions as how to prepare and endure please post any help you can offer me. I am going to gain all the weight I can before starting and the Dentist which I saw today said all my teeth were OK and would give me a priscription for toothpast with high floride content. He didn't know anything about a Tray which I have herd mentioned here. So please, ir you have any advice please let me know. Thanks Again

Roger, I am so glad that you are having radiation. I just think you have one shot to be cured and you can't have any room for what ifs. There are so many under one yr Tx. so you have a ton of support and knowledge to get you through. Best of Luck Roger,
Mark D.