Hi

I am Richard Clegg, age 45 from England. I was disgnosed with cancer of mouth & neck in February 2007 and had surgery at the end of March to remove a tumour from my mouth and some cancerous material from my neck (ie, I had a neck dissection). I have also had plastic surgery - an artery has been taken from my wrist and put into my mouth (flap surgery) and I have had a skin graft from my thigh to my wrist.

So far, I have been doing well. I was in hospital only a week and have had no real pain at all. I am now back at work, eating and drinking normally and driving - which I gather is not bad going for only just over a month after the surgery.

The big uncertainty at the moment is whether or not I will need radiotherapy. I should find out on Friday and am obviously hoping that it won't be needed. There is some uncertainty as to whether radiotherapy would require a PEG tube (something I have not had yet and am rather hoping I won't need). So far I think I have been very lucky but I am quite anxious about the side effects of radiotherapy and about the possibility that I might need a PEG.

Richard

Welcome Richard
I now you are not familiar with our site yet. But if you go to the "survivor stories" forum, in the topic "no peg-weightloss" there was just a big discussion on the peg. To peg or not to peg? Also, click and read the faq at the top of the page. It will help you learn & navigate about this site. If you put in your "signature" with your Dx & Tx it helps everyone respond to you as they know all about your "journey".(see signature in the faq and read "to all you newbes" in the General Board forum) This is a great site and everyone here has oral cancer or are caregivers. Any questions you have, put them in the appropriate forum and name it. All your questions will be answered. We also have 2 search engines. One at the top and one at the bottom of each page. I suggest just surfing the whole site to get familiar with it. I hope you do not need the radiation treatment. But do not worry. You are never alone here and everyone will walk with you through it. We have people from around the world here. Where in England do you live? We have several people also from the UK. Good Luck, Petey

Welcome. I'm srry you had to come looking for us.

It sounds like you're doing remarkably well this soon after surgery. I had a similar surgery last June, although I also had 40% of my jaw removed and rebuilt using fibula. I then followed up surgery with 6 weeks of radiation.

If I had to do one or the other again, I would take the surgery in a heartbeat. That said, the radiation was, and is, do-able.

It WILL make you sick. It WILL take a long while to feel good again. It also CAN be done without a PEG. I did it, and didn't lose very much weight, but it was tough. You're mouth and throat will become very tender, and adequate pain management is the key, but you can get through it.

I had a feeding tube post surgery, and I was highly motivated to avoid having another one during radiation. My motivation to keep drinking was severely tested at times, but I got through...it's too important to allow it to slide.

If there are any specific questions you may have that I, or others can answer, ask away!

Again, welcome
Wayne

Thank you both for your comments. To answer your question about where in England, I am in Southend-on-sea in Essex. I have also had a part of my jawbone removed, but only a very small part. I have read some of the postings on PEGs. I think what bothers me most is the thought of having a tube shoved down my throat while I am still awake. I don't seems to get on too well with tubes. They tried to put a nasogastric tube up my nose in the hospital and I had such a bad reaction they had to give up !

Richard,
A PEG is not inserted down your throat; it is established via and incision directly through your abdominal wall and into your stomach.

I don't know if that's easier or tougher to take than the naso-gastric tube idea. It is a much more invasive procedure (the PEG, that is) and requires a degree of anaesthesia.
Wayne

There may be different models of PEG tubes but when mine was installed last summer, at least some part of it went down my throat. I had to sit up on the table and remain awake while a small tube or tubes of some type were pushed through my nose, down to my throat and into my stomach. The nurse, tech, or MD doing the procedure (there were 2 of them together) told me I had to keep swallowing while getting the tube down into my stomach. Probably the most uncomfortable thing I have ever had to endure. Once the tube was in the stomach they put me completely under and when I woke up I had the tube coming out of my stomach. This was not the same tube they put up my nose as it was black and smaller diameter than the one coming through my stomach wall. I don't reacll asking many questions while all of this was happening. I seem to recall being in a mild state of shock.

Bill D.

Hey Richard
The PEG sounds so lovley, I think I want one too! On a serious note, I definately will get one when I get radiation beacuase when I get a sore throat I hate to eat.(swallow) I know I would not be able to sustain the proper amount of substances needed to keep up my strength. And you definately do not want to have to stop treatment because your dehydrated and weak. Weight loss is also a concern for me. I'm 5'11" and 180#. And God forbid if I could not take my meds. Even though a lot of people say they make you nauseas, I will force myself to take the medicine that helps save your saliva. ( no gaurantees ) From what I've read here it's only the installation and removal that is uncomfortable. ( quick procedures ) I hope I have this right. I also understand there is nothing in your nose or mouth once it's in. Can't wait!

Hi richard robin and i are located near Portsmouth in England .Your diagnosis is almost the same as robins except his was N2.Rob was in hospital for his surgery for 4 days and returned to work after 2 weeks.Radiotherapy was decided on but he wasnt offered a PEG tube.On day 15 he was admitted to hospital to have a PEG tube in his abdomenfitted.He had it done in the x-ray department under sedation,and when he came back to the ward he had no recollection of the procedure which involved an endoscope being passed down his throat and a hole punched through his abdominal wall.He was discharged the next day.Robin lost a huge amount of weight in the first two weeks of his radiotherapy,and the PEG WAS INVALUABLE .He has absolutely no problems with it and it takes all his nutrition and medication.the tube tucks neatly in to the waistband of his trousers
Liz in the UK

Thanks to everyone who has posted. I have just been told that I am now clear of cancer and I don't need radiotherapy - so no PEG tube. I suppose that makes me now a "survivor" rather than a "patient". Looking around at some of the postings on this site I think I have been extremely fortunate.