hi my name is lee 49 years of age have cancer of left tonsil,both been removed now wating for treatment to start.

Hi Lee

Hello, and welcome to the club no one wants to join. I don't know if it makes you feel any better, but you are not alone in this--there are lots of really great people here on the site, and several who've been through tonsil cancer. I'm sure that any of them could answer your questions.

When do you expect to start treatment? Have your doctors told you what they're planning?

Julia

treatment to start within 3 weeks dentist 1st then mask fitting bit worried a bout peg.treatment is going to be 6 weeks of raydeo (spelling and 2 lots of chemo.

Hey Lee,
I have a friend from another site she is one two years out now and still in remission, she did great and is doing well now, I am getting my first peg on Tues and have angst about it too, my friend tells me its not a big deal and will help us greatly keep up our nutrition which is so important to healing process. I had throat cancer twice and just had major surgery three weeks ago,(why im getting the peg) too painful to eat. I did radiation the first time and did the mask thing, you will have your angst about it but before you know it you jump on the table and get er done. my email is denimite@verizon.net if you need to chat I am available and willing even though my cancer was in diff location. chemo is the rough one but again you can do it, many have and many will , we will survive! Believe it! good luck

Hi Lee,

As Julia wrote, '...welcome to the club no one wants to join.' Sorry that you have to meet up with this motley but courageous crew, but here we are.

The first few days on this message board I spent hours going over the posts by members and soon realized I had overdone it; there were hopeful posts and tragic posts and for some odd reason I clung to the depressing ones. If you're like me and you like to research everything, give yourself a break every so often. Sometimes it all seems hopeless and overwhelming; other times there's only good news and new pictures that members contribute that can lift your spirits.

One thing to remember is that most of those who have had successful treatment get on with their lives and no longer post. Those are the people we need to hear from, but they rarely come back unless it's an anniversary or some sort of milestone or a new concern. There are a few who always come back (Haag, '12 years and kicking it,' John Spencer, Julia, Paul, etc.)

If you're fortunate and have a caregiver or caregivers, take their emotions into consideration as well. Tough to do when you're the one coping with the cancer problem(s), but having been there as a cancer patient twice and the primary care giver twice, I can honestly say that they're equal. They suffer with us but in different ways. Be kind.

Best of luck to you. Keep us posted.

Remember the words of that Shakespearean sage, Winnie the Poo:

You are braver than you believe, stronger than you seem, and smarter than you think.

Mimi

Hi Lee

I too had cancer of the left tonsil and am now about to start my 5th week of RT - no chemo. So far so good. I see you are based in London, where are you having your treatment? I haven't had a PEG fitted yet, and haven't needed one (yet) but am dependant on Fortisip (meal replacements) and oromorph! Don't feel too bad though. I am having my treatment in London, and have been going home at weekends but decided the travel was getting a bit much for me. So this week my sister has brought my youngest child (6yrs) up to see me and I'm taking her to the zoo today as my treatment isn't till 4pm. I'm sure I'll be exhausted by lunch time, but it's got to be done, and I can sleep it off later!
For me the mask fitting was the worse bit. The last 4 weeks have been a bit up and down, but I've managed to walk in and out to the hospital most days (about 50mins round trip) and on the whole its been ok.
Please feel free to ask me anything at all, I'm only just ahead of you in the healing process, so might be able to help.
Good luck.
Vicky

what can i say very kind words,going to be treated at st thomas/guys.really dont want the peg is there any other options.as what i have read the pain can be really bad ie to swallow.

Hi Lee

I have managed without a PEG so far (still got 2 weeks to go). I am being treated at the Marsden and I was told by my oncologist there that only 10% of patients need a PEG, but the nurse told me 30% - either is still better than my local hospital where all patients are fitted with a PEG, but of course they are dealing with much smaller numbers. The other thing I was told was that of those who are fitted with a PEG, 30% of those are fitted post treatment, so I'm not out of the woods yet. I haven't really been able to eat anything for 2 weeks now, but am just living off Fortisip which is a milkshake type supplement. I have 3 a day, and haven't lost any weight since I've been taking them. At the Marsden there is no pressure to have a PEG fitted unless you really need it. Most people on here have had a PEG and have absolutly sworn by it, and certainly, although I was very resistant to the idea at the beginning of my treatment, I will now do whatever it takes to get through this, and if I need a PEG - so be it.
I hope this has helped a bit.
Good luck.
Vicky

thanks for your reply really dont know what to do i will try to talk to patiants at the hospital.also said i could have tube put in nose but been told it falls out a lot,but we will see but you are doing so well keep up good work be strong and tuff i hope all is good god bless lee,,,

hi lee

i had an NG tube, (up the nose) for about 6 weeks at the end of my treatment and it was the best thing i couldve done. i fought it and resisted having it and struggled for weeks eating less and less, and im sure my recovery would have been quicker had i had the tube earlier and not missed out on valuable nutrition. it came out once and they had to put it back in and there were a couple of times id tug at it in my sleep but i got through it and like i say it was a real life saver in my case. good luck and all the best

Hi Lee

There are pros and cons to each type of feeding tube. The major one I can see for the nasal tube is that it doesn't require additional surgery; mine came standard with the 2005 Hemiglossectomy. It was pretty well stitched in, but for added stability we taped it to my nose. As for ng tubes "fall(ing) out a lot", keep in mind that they're pretty long, extending several inches from your face, up into your sinus cavity and then all the way down into your stomach. When my ng was removed, my doctor kept pulling and pulling until the head of it finally emerged; it reminded me of a magician pulling a long string of multi-colored handkerchiefs. The advantage to a peg is that people can't see it every time they look at you.

Julia

This message has been edited. Last edited by: Julia,

Hi everyone

I am quite interested to read about this as I was never offered a PEG at any time during my radiotherapy, neither was it ever discussed and I lost quite a lot of weight.

I did have a nasal tube after the surgery, but that came out after six days. I agree with Julia regarding the length of it. Didn't realise it was quite so long!!!

Wendy