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.

Roger;
I wish you the best and I personally believe you have made a very wise choice. I visited my Radiation Oncologist today and he mentioned that I needed to get back to the dentist now that I can get my mouth open and can probably handle a cleaning. He said that care of the teeth needed to escalate now with cleaning every 4 months and he mentioned the trays as well.

On my dentist visit prior to treatment I was prescribed a flouride paste to use through treatment. When I told my RO I had started using the paste again he said that was fine as long as I got back into the habit of using it daily. He stated the radiation really abuses the enamel on your teeth.

You will have challenges through your treatment but you will make it. As Mark stated you will find a lot of help and information here.

Stay strong & Best Wishes,

Steve

The tray is a soft insert set to hold the fluoride on your teeth for the time required -- I found that removal after treatment was nauseating me, so I just manually applied the paste with a brush and held it in my mouth for much longer than the time alloted while I read a book or watched TV or messed with computer.

What you want to do during treatment is be aware of trismus, and how to avoid it, and also try to swallow as much as you can during the treatments so you don't lose that ability.

I recommend a PEG; if you don't need it, you don't have to use it (except to flush it with water to keep it cleaned out), but if you need it, it will be there.

One final note: A lady of my acquaintance had her treatments (IMRT in her case) at MD Anderson in TX. Her dental oncologist made some sort of "stent" to protect both her teeth and saliva glands and she came out of the treatments with lots of saliva intact; I don't know if that was appropriate for the XRT that I underwent, but I wish I could have known enough at the time to investigate the possibility.

Roger,

I am including a post that I wrote about a month ago for some others and have added to other posts since then. I hope it help you prepare for what will happen to your body. Gaining as much weight before you start and 2 weeks into Tx can't hurt but I doubt that you will put on many pounds. You need 500 extra calories a day to gain just 1 pound in a week.

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

I had a private message about the dental stent I mentioned above, so here's part of my response for the public "record".

My friend had it done just a couple of months ago at the MD Anderson Cancer Center in Texas (one of the Super-Centers); her dental oncologist provided the stents.

I had never heard of it either; I thought a stent was something they inserted into blood vessels to keep them open.

A Google search of "dental stent oral cancer" came up with this site from the UK (Do a Ctrl+F and search for "stent")

http://rdoc.org.uk/protocol.html

According to her, she came out of her 35 IMRT treatments with something like 50% saliva on one side and 75% on the other (heck, I didn't even get measured by anyone, altho after one year some is coming back). Despite the tone of the article above, I don't believe she had any of her teeth pulled.

Here's an even better link from the M D Anderson Center re: Stent

Here's more concerning trismus and fluoride:

Trismus is being unable to open your mouth wide (apparently the radiation affects the fiber in the muscles or tendons of the jaw; I didn't discover I had it until I tried to take a bite of an apple and discovered I couldn't open wide enuf to take a bite!)

Do a search of the site (go to bottom of Forums Page and click on Homepage, then click on Search; the search button at TOP of page only searches the forums.

Here's the link:

http://www.oralcancerfoundation.org/dental/trismus.htm

Opening wide often and putting tongue depressors across your mouth and biting on them are both supposed to help, plus there is some sort of rubber wedge system available ($$ prescription) to keep it from happening. It sneaks up on you, esp if you are getting your nourishment from a PEG (feeding tube) because you aren't opening your mouth much.

The fluoride treatments (using a paste called Prevident) are done once a day, every day for as long as we have our teeth (hopefully the rest of our lives!) -- After flossing and brushing my teeth at night, I put the paste on my wet brush and brush the stuf in, then hold it for at least the recommended ten minutes (usually longer as I feel more is better in this case) and then don't eat or drink anything for at least one-half hour after the ten minutes is up. If one uses the trays, put a line of paste in each of the uppper and lower trays and then put them over the teeth for the allotted time.

My dentist writes a prescription for the Prevident and I get it filled at the pharmacy (dentist wants almost $20/tube, pharmacy is lots less expensive thru my drug plan, which doesn't seem to want to mail order the stuff).

David,

I have read in your earlier posts that you did not have a PEG/feeding tube and still wonder at how you made it without one. I received my treatment and am still under the care of Emory University Hospital providers. Prior to the start of my treatment last May I was informed that I would have to have the PEG installed before treatment. Apparently, this policy began at Emory about 8 years ago and they will not treat you if the PEG is not installed first. They advised that they had too many cases of patients whose treatment was interrupted by having to stop and have the PEG installed mid-treatment.

Bill D.

Bill D,

My RO told me that at Moffitt he preferred that his patients went through the IMRT without a Tube and he explained why and I looked young (his words, not mine) and in good shape and he thought I was a good candidate to make it through. He did warn me that it might be difficult and if I had to have it put in after Tx started it could really mess the schedule up. He then said "it's your decision". Not knowing anything about the pain and nausea he was talking about and being a typical macho stupid male I said "lets go for it" as I puffed my chest out.

I have recovered remarkable well and have had zero swallowing problems and have eaten anything I wanted so I am satisfied with my decision. Would I have done it knowing what I went through...I'm not sure but I guess I won't ever have to face that decision.

David,

My hat's off to you for making it through without the tube. I just didn't have a choice if I wanted to be treated at Emory. The tube was a miserable experience but probably more so for my wife who took care of my feedings. I just could not deal with the "freaky factor" of pouring something directly into my stomach through a tube. It just all seemed so unnatural. I also learned, after one occasion, not to cough while the tube was uncapped for a feeding.

Best of continued good news for both of us as healing continues.

Bill D.

Hi Bill,

I also found out that the tube worked both ways and considered it a party trick to clinch my abbs and watch it come back into the surenge. My wife made me laugh one day when I was "feeding" myself and that is how I found out.

The other nasty part about the tubes is the cap wears out after a while. One night I woke up in a pile of stomach contents that came out of the uncapped tube. Not pleasant.

Jim

You guys are grossing me out...and I thought I went through some disgusting things in my reaction to TX !!

Jim,

Remind me NOT to go to a party where you will be. LOL

I didn't have a tube either, and to be honest the thought of having one put in during treatment was a strong motivator for me to keep swallowing.

I had one post surgery for two weeks, and did NOT want to go there again. The deal was that as long as I did not lose more than 7% of my body weight, I could avoid the tube.

I was skinny to start with, even skinnier when I finished, but I only lost 5.5lbs during 30 IMRT treatments. It was brutal at times, but I made it through without the tube. I'm glad I did, too. I have no trouble with swallowing now, and have almost all of my sense of taste back as well.
Wayne

Reading between the lines in posts in other threads, for some folks, the tube apparently becomes a surrogate for the cancer process itself, but a surrogate that can be fought every day and beaten (getting by without it).

In my case, I had the tube and was glad I did, altho I wish they'd told me more about swallowing and trismus (I've gone back and talked to the nurses about it and they took good notes for future folks).

Also, in my case I was taking Amifostine (Ethiol) and they told me up front that if I couldn't keep my weight up, they couldn't keep giving me the Amifostine -- I frankly don't think I could have done that without the tube (If one barfs, the nourishment value is zero and you then don't know how much more to take to replace it, plus it's hard to choke more down if you've just barfed...).

I kept on swallowing my daily meds and took all my water by mouth, so I was swallowing, just not the liquid nourishment. Good thing about the tube is you don't have to taste any of the nourishment so the flavors didn't matter <g>.

Unfortunately, I became allergic about halfway thru my XRT, so I had to discontinue it anyway. I'm getting some saliva back (one year out) and don't know if the Amifostine has helped that or not.

I rigged an easy-disconnect neck holder for my tube so I didn't have to tape or up or anything like that.