Hi, My name is Tony and this is my first post to this board.

I am 55 years old and live in a small town in Alabama. I install computer software and train customer how to use the software. The majority of my job entails traveling across the country a week at a time doing the installations.

I was diagnosed last week with Cancer of the right tonsil. This is the primary site. What started all of this was a lump on the right side of my neck was removed (after anitbiotic treatments) and found to have squamous Cell carcinoma.

Because of the size of both tumors and the fact that it had spread to my neck, it has been classifed as stage 4.

I am just starting the journey toward treatment. I am going to be treated with radiation and chemo therapy. 5 days a week for 7 week of radiation and 1 chemo treatment each week.

After the treatments, I'm sure that I will have to have surgery for a neck dissection. Other surgeries will have to be determined after treatment has been completed.

The radialogist wants to put a feeding tube in right away so I can learn to use it before starting the treatments. I really don't want to do that, but I have seen comments on this board that it is probably the right thing to do.

I am a very big fellow, over 270 lbs and I would like to think that I could get by without the feeding tube. Any comments would be welcome.

Also, any suggestions regarding products and/or things that I can do to help with the side affects of the radiation will be helpful.

I look forward to being an active participant on this board.

Tony

Welcome, Tony. You are about to start what will be quite a wild ride, but never forget that many of us have been there before you and are here to talk about it. This is something you can do! About the PEG tube, there is more than just weight loss to consider. When swallowing is so painful that you cannot get anything down, the PEG allows you to get pain medication quickly, as well as keep yourself hydrated, which is critical. I found the PEG to be easy to use, unobtrusive in my daily life, and not painful. Even with it, I lost more than 50 lbs. The combination of radiation and chemo is one of the world's most effective diets (grin). Unfortunately, one loses muscle first, which makes recovery more difficult. Use the search feature at the top of the page for "PEG" and "feeding tube" and you will find a wealth of information as this is one of the first big issues every patient faces, and in many cases, mine included, it becomes a major sticking point. Am I glad I had it? You bet! Would I do it again? In a New York minute. I set records for rebounding and getting back to real life and that would not have been possible without the PEG which allowed me to receive balanced nutrition when I didn't care one way or the other about eating, and could not have taken anything by mouth. Set soapbox = off.
Joanna

Hi Tony,

Welcome! Sorry about your diagnosis but you have found an excellent resource here. A little over 2 years ago I had the same diagnosis as you (right tonsil) I was 40 at the time.

You haven't mentioned where you will be recieving your treatments (what hospital) So I am going to assume it is the best in your area. My opinion on the feeding tube is based on my experience. I did not need one. I had surgery first then after 6 weeks I started radiation without chemo. I lost 30 pounds through the course of treatment and my lowest weight was what I weighed at high school graduation. It is impossible to predict how you will do but if you have a few extra pounds you may do just fine. I believe the feeding tube can be put in any time so my suggestion is to ask your doctor if you can try without and see how it goes for you. There are benefits to using your normal chewing and swallowing muscles too (even though it can be really challenging).

I personally feel that the feeding tube can be a source of problems by itself. I will say there are a good number of folks here that really were helped by having one.

On another subject Salivia I would find out if you can do anything to protect the salivary glands. Of all the things that I went through, loosing the salivia was and continues to be the worst part.

I would get to your dentist and have your teeth checked out, then have them give you a flouride treatment and seal (it is like cement) the tops of all the molars. Ask them to get you on a 2 or 3 month checkup schedual and make sure you go. Oral hygiene will become your new hobby.

There are lots of ways to use a blender to prepare nutritious meals. Let me know if you want some ideas.

Ask any questions you need to and take care.

Hi Tony,
I am recovering from SCC, stage III, right tonsil and I'm 55 also. I completed treatment 6 weeks ago. I didn't get a feeding tube either and many times I wish I had. I dropped almost 60 lbs. I had to go the hospital twice for rehydration. It was difficult to get medicines, food and water down, just as Joanna posted. If you have a feeding tube put in it's better done sooner than later. I'm coming out with a book later this year "Dr. Allsebrooks Radiation and Chemo Diet".

I wouldn't be so sure that you will have to have surgery after radiation. My tonsil tumor was 5cmx3cm and the radiation just melted it away. I also had IMRT, which will spare 2 of the 3 salivary glands (they couldn't save the one behind the right tonsil). I am on the mend. having graduated from liquid to soft foods and actually ate (and enjoyed) a filet mignon the other night. The radiation and chemo effects are declining and I'm out of bed every day for at least 8 hours.

One more thing about your teeth -you will need to have dental trays (AKA bleach trays) made to do your own flouride treatments (which are recommended daily). The flouride stuff I use is prescription and I got it from my dentist (Butler, "Protect"). Get Biotene toothpaste and a baby tooth brush also.

Thanks to everyone for the quick replies. I can already see how valuable this site will be as treatment begins.

Mark, I am having my treatments done at the University of Alabama, Birmingham Medical Center. It is the place in Alabama to get advanced "cutting edge" treatment.

Thanks again and I'll continue to read and post as my treatment begins.

Tony

I had similar experience as Mark. I did not have PEG tube and I loast 45 lbs during the treatment(20lbs from surgery, 25lbs from radiaitn). I had surgey to remove the tumor before the radiation and concurrent weekly chemo. The reason I did not have PEG tube was because I was afraid that the chemo had suppressed my immune (sp ?) system making me easily get infected.

I did have hard time to eat during the last few weeks of the treatment, the doctor prescribed medicine to numb my throat so that I could eat my meal.

Hi Tony, My husband had radical surgery in February and started radiation seven weeks later, he has seven more treatments before he is finished next week. He had a NG tube after surgery but had that removed four weeks later. So far he has been without a feeding tube. He is drinking Ensure and some healthy shakes I am making him. I know it is difficult for him to swallow but he wanted to try it and the doctors are okay with it so far. He too is a good size guy and had about 30 lbs he could of done without before surgery. He has lost about 35 so far and I know he will lose some more. I hope he can make it through without any problem. By the way, he too is originaly from Alabama. I believe the guys are tough from there so hang in there. Hope to be in touch later.
Becky

Hi Tony:

Welcome to OCF. I see that everyone had spared you the PEG jokes so far so I won't go there either! Many of us do look fondly at our best girl PEG because she is reliable and constantly present but others don't find that an endearing female trait so only you can really decide what works for you.

Since you have some extra weight to spare, you probably could physiologically lose 40-60 pounds and still be robust enough to get through radiation followed by a surgical procedure. However, it is important to consider that protein stores assist greatly with wound healing and this may be the benefit of having the PEG tube during radiation since most of the supplements have a high protein content. The other factor to consider is motivation. It is really hard to force yourself to drink supplements when you are exhausted from radiation and mustering even a few sips can take a long time.

My fiance, Dave, had a tonsillectomy and neck dissection first prior to radiation. He started out at 172 lbs pre-op and went to a low of 128lbs during radiation. Dave did opt for the PEG at the start of radiation and is glad in retrospect. He finished radiation at the end of November and is now able to eat everything and his weight is currently about 143lbs. and hopefully climbing over time.

I should also mention that insertion and removal of a PEG tube is often done under endoscopy(in a GI outpatient unit) which requires sedation but it is a fairly low risk procedure unless you have other major health issues.There is post-procedure pain for a couple of weeks for many folks but it can be relieved with minor meds for most. The tube requires monitoring,cleaning around the area daily, and usually application of bacitracin plus a piece of gauze around the tube. The incidence of infection around a PEG tube is generally low if daily care is taken but can occur.When the tube is removed, the hole in the abdomen is a few centimeters in size and seals over within a few weeks and leaves a minimal scar.You can travel with it and use it in an airplane bathroom with as much ease as you can do anything else in an airplane bathroom!

For Dave, the benefit of the PEG outweighed the risks. I hope this info helps you. The folks here are also pros at neck dissection questions and literally gave me a crash course in what to expect post-operatively. Happy to answer any questions on that topic when you know what you next steps in treatment will be.

Welcome Aboard,
Kim