G'day to all from down under...although we're Canadians!

I'm new to this site but I have read you quite a lot for the past few weeks. Today we're facing a a big step and we're quite ambivalent about the choice. I told my husband (hubby as we say)that I would seek your advice!!!

So here I am. Marie-Lyne, David's wife. At age 44 with absolutely no warning signs except a palpable node on the right side of his neck, we were stunt to learn that David had a SCC of base of tongue. No smoking, healthy lifestyle,super in good shape, social drinker....really came out of nowhere. I know we are not the first ones but boy when it hits you, it really hits you.

David had a R) radical modified neck dissection on 01-10-05. 2/36 nodes positive. Tumour is still there and will be treated with 7 weeks of radiotherapy on right side only. He was back to softball/baseball 10 days later. 9 teeth extracted 01-27-05 back to softball/baseball the next day! He's scheduled for a PEG in 2 days. He's strong as a horse mentally and physically BUT psychologically the PEG is a very bid deal....I mean a BIG deal.

His radio-oncolist proposed the PEG to David as he does for everyone else. One of his mates (who actually is from Arizona) had similar treatment for his SCC of R)tonsil area and refused the PEG. He made the decision that he would swallow through the end. David has also spoken to another person who actually choose to have the PEG and was very happy with her decision, actually she kept longer then she should have but for her it was better this way. Now I know that each case is different but I was wondering if any of you have decided not to have PEG and can "testify" that is was a good choice or an error.

I welcome all advice as David's in the process of taking his decision. I will pass all your comments.

Thank for your help. I hope I will be able to help in return one day.

cheerio, Marie-Lyne

Marie-Lyne
Wow you have just opened a hornets nest with your question, if you do a search of this site you will find that this is the most debated point EVER
Now I had a PEG, I had surgery and a graft and was nil by mouth for nearly a month so no option. For me was no big deal, except in the hospital when I was on a 14hour pump system, and I threw everything back, once I used a syringe and fed myself every 3-4 hours I was fine.. Now that is just my take on the PEG.
Please do a search on this site and talk to your hubby's Docs, try and get as much advice as possible
I'm sorry that you had need to find us but stay with us we don't bite
Sunshine... love and hugs
Helen

Hi Marie-Lyne --

It is quite a shock to get a diagnosis like your husband's, similar to my husband's -- out of the blue and essentially symptomless. You and he will have to be strong -- the radiation treatment is long and stressful.

My husband had his primary (tonsil) tumor removed but no other surgery, and received 7 weeks of radiation and 7 low-dose chemotherapy infusions, which is a standard protocol where he was treated (Hopkins). They radiated both sides of his neck, the right -- where he had two positive nodes -- and a lower ("prophylactic") dose to the left side. The advice, given strongly by medical and radiation oncologists and the nutritionist alike-- "if there is bilateral radiation you *will* need a PEG and if it is one-sided, you *may* need one." They recommend getting it put in before radiation starts, to allow time to recover and also, while you are still in good shape. Some people refuse, and some of them make it through OK (but struggle near the end) and others end up getting a PEG put in later -- often after becoming somewhat debilitated. I know a lot of people on this forum have said the PEG was literally a lifesaver for them!

My husband got a PEG, with a great deal of reluctance, and ended up never using it! For some reason, he did not get as severe mucositis as most patients and was able to swallow throughout, although he did lose some weight. To add even more irony, the PEG failed in his last week and fell out - they opted not to replace it as he was doing so well.

I should add that our ENT and both oncologists stressed, nay -- threatened -- that he needed to *keep swallowing* something -- even if only sips of water -- throughout or he could lose the ability to swallow as the muscles, tendons etc. can atrophy through disuse -- just as if you had your arm in a cast for 6 weeks.

So I guess the moral is: maybe he can make it through radiation without a PEG, but it would ensure he can maintain addequate hydration and nutrition, which will in turn prevent interruptions in treatment (which can reduce treatment efficacy) and improve his chances for a quick recovery. It is not that big a deal, just a bit of a pain to flush each day. He should try to eat as long as he can and continue to swallow. Get Difflam -- available over-the-counter in NZ -- benzydamine HCl mouth rinse -- which helps reduce severity and duration of mucositis. Our dental oncologist was in a clinical trial of that product and thinks it worked great for HNC radiation, but it's not available here yet. Ask your RO or nurse about it.

My husband Barry was eating regular but soft foods eight weeks' out of treatment and now, 4 months' out, is eating everything but very spicy stuff and very dry things like crackers and crisps. So hopefully for David this will also only be a "bump in the road" and that he will soon return to baseball (in New Zealand?) with his full strength.

Gail

Hi Marie Lynne
I am new to this board as my husband age 59 but a healthy robust 59 has just been dx with oral cancer of floor of mouth. We are waiting to meet with the Ca surgeon on Tuesday. I am fortunate or unfortuanate however you look at it to be an RN and an OR nurse. I will give you my 2 cents about the peg. I feel that it is a big step to admit you have no control over your body if your husband wants to remain active and i know mine does i think I would strongly suffest you wait. it is a very minor procedure done most of the time with local anessthia and I feel can always be inserted at a future date if the need arises.
I know this aspect will be particularly differcult for my husband becasue we enjoy eating out and do it foten. Besides being in the health care field i have always expressed my concern about feeding tubes prolong elederly lives, never thinking we would be heading down this road at a young age.

Good luck in whatever you decide
Jag

Do not let them radiate only one side, that is not the standard. If they insist, find a new doctor!

Hello Marie-Lyne,

I had a peg tube inserted before my surgery for ssc of the right tonsil. I was at 145 lbs. pre-cancer and dropped to 121 lbs. in two weeks after the surgery. When I started using the peg on a reguler bases I gained most of the weight back in about 6 weeks. It is a personal decision on your part. He will lose weight during treatment. How much would be a guess. Some have swallowing problems which doesn't allow enough nutrition to be taken in orally to heal and maintain weight.
Some go without the peg and do fine. If he can eat enough to heal and maintain his weight the better off he will be. Thats just my opinion. The old saying "Use it or Lose it comes in to play here.
Go to the search engine at the top of the page and type in PEG, You will have enough to read for quite some time.

All My Best, Danny Boy

Marie-Lynn, Glenn is absolutely correct. This cancer has a nasty habit of jumping from one side to the other. Standard practice is to radiate BOTH sides. This is a VERY important point and should be discussed with your doctor sooner rather than later.

With regard to the PEG, I was ready to leave town and change my name. It was beyond a big deal with me. Sanity prevailed and I felt incredibly stupid for all the worrying I had done beforehand. I was put to sleep and woke up with a tube. Some people have soreness, but I was in very good shape and was out doing heavy yard work the next day. It literally saved my life because radiation and chemo made my mouth too sore to take medication or even water, let alone food. I am quite sure I would not have been able to complete treatment without it.

There are people here who managed without, but I am very glad I had one. If you have specific questions about a PEG, I will be happy to answer them.

But do insist on bilateral radiation. It could save your hubby's life.

While you can put one in at any time, my experience in talking to many patients is that they wait until they are already sliding backwards before doing what is needed. What I mean is not just loosing significant lean body mass, they are not healing as well after treatments as they could be with out the proper nutitional intake (you're healing everyday after radiation etc. as your body tries to repair the damage done by the treatments) All this delays ultimate recovery and compromises quality of life. You can heed the advice of some here who have had an easy go of things without mucocitis, (and he may be one of the lucky few who fall into this category) or you can listen to the group like me that could not eat by mouth at all, and refused the PEG until my doctors wouldn't take my no for an answer anymore. In retrospect I should have had it right form the get go. If you end up not using it... so what? If you need it it is there. If he starts losing body weight, it wil not just be fat, it will be muscle mass ie. lean body mass, and that is not a good thing. If he is not taking in the right nutirents because it hurts, tastes like cardboard, or he is too apathetic and sleepy to care about eating, he is still doing damage to the rate at which he will heal. The downside to the PEG is so small. If he drops more than 10-15% of his body weight, a quality institution is not going to let the choice be his, he will be getting one...but instead of losing that nutritional factor for that amount of time, why even go down that path?

Also, while having a PEG inserted may under "normal" conditions (whatever those are since a PEG is usually inserted when soemthing is not normal) be "minor", it isn't something I would have wanted to have done when my throat was raw from radiation! I suspect that makes it much more major than it was to have it done beforehand.

I have a love-hate relationship with my PEG. It's what has kept me alive and healing. OTOH, I am praying that I can get enough swallowing ability back to get off it. I do NOT think I have problems with swallowing *because* I have a PEG, though. The treatment made swallowing difficult and the PEG saved my life despite that.

I had mine inserted over two weeks before I started radiation and I kept eating and not doing the PEG during the first two weeks of radaition, but by the fourth week, I was really glad I had it as swallowing had become excruciatingly painful. For some people, they'll be lucky enough to never get to that point and if that's the case, all you did was prepare for the worst. It's VERY simple to get rid of the PEG at the end.

Nelie

The PEG was a life-saver for me. I got it after a couple weeks of radiation when it became obvious that I could no longer get enough nourishment from swallowing. I went to work with it under my shirt, played golf with it, etc. I would hang it on a nail near my desk and feed myself at work and at times I hung it in a locker room toilet and fed myself before a golf game. It was never a problem and I kept it for 10 months, only getting rid of it when it was clear that I could swallow well enough to sustain myself. I still lost about 20 pounds but it would have been much worse without it.

Best of luck,
Danny G.