Hi my son had tonsil cancer which went to the lymph nodes he had his tonsil removed and has had 2 chemo sessions and is starting radiotherapy next week. The doctor wanted to put a feeding tube into his stomach in case he can’t eat but he has refused it. I’m worried he will lose weight if he can’t eat because of the radio just wondering how bad it can get?
Hi JJblueeyes welcome to our little community So sorry to hear about your son. There is no doubt about it the treatment is awful and the pain considerable but manageable. Some people do get through it and manage to swallow enough nutrition. Most don't. The better nourished your son is the better his recovery will be, I had a nasogastric tube placed in week four for eight weeks. It was my life saver. It let me stop fighting with food to keep me alive and stopped me being frightened of trying to swallow.I made an unremarkable recovery and was eating a decent amount of food by 12 weeks.
Don't despair. The hospital won't let him lose too much weight. If he does he will be hospitalised for his treatment and there is aways the option of having the NG tube
Have a look at the last entry in my blog linked at the bottom of the page....but only if you are not squeamish. There is a picture of what radiotherapy does to your mouth
How old is your son,by the way? Youngsters seem to cope better
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi. I had tonsil & lymph node cancer. I had bilateral tonsillectomy followed by 6 weeks of chemoradiation. My hospital trust insist on a PEG prior to starting treatment.
I used mine from week 3 of treatment as I could only swallow sips of water. I used it for all hydration, meds & feeding. I fed overnight via a small pump. I lost some weight (1.5 stone) & was reliant on my PEG for a few weeks post treatment. My advice would be to take the advice of his medical team.
I had my PEG feeding tube inserted 3weeks ago. For me it was painless and easy process. I have not been troubled by it at all. At a personal level I would not have a NG tube as I find the thought of that abhorrent - that is why I went PEG.
Although I don't use it to feed at the moment (I have just completed 3 weeks of RT) that point is not far off. I did get into trouble swallowing earlier this week and had to hydrate through the tube. That gave me the space I needed to get swallow sorted later that afternoon. I am now back on track. Knowing I have this safety net really does help through the treatment.
My clinical team are anticipating that I will be at least partially pump fed by the end of week 4.
Loosing weight is a big problem as the mask needs to be a tight fit to ensure the RT is accurately targeted. They can readjust but you really don't want the delay mid treatment. So he needs to maintain his weight at the time of mask fitting.
Hope this helps.
Hi thank you for your reply. My son is 46 he’s married with 2 girls 13 and 10 he is adamant at the moment not to have the feeding tube but if it gets too hard to eat I’m hoping they will insist he has to have it.
Thank you for your reply I’m hoping he will change his mind at the moment he is adamant he will be able to cope without it and live on soup and milk shakes but if it gets really bad he might change his mind.
Hi again. All you can do is the best you can. Peter’s point about the mask is a valid one though there is room for manoeuvre. You sound like a very caring mum and grand mum and I’m glad you’ve reached out to us here. You’ll probably have more questions along the way so stay with us. There’s always somebody around to help.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Why is he so determined to do without a tube? It's really an easy procedure, it's out of the way and discreet, and using/looking after it quickly becomes second nature. It's a great "insurance policy" and one that the majority make use of (I've had two).
All very plausible saying he can survive on soup and milkshakes but there's absolutely no guarantee he'll be able to, and going without will greatly increase his chances of being admitted at some stage, and for longer than he otherwise might.
Either way, forty-six is very much on the young side of people diagnosed, so I'm sure he'll get through whatever options he choses, but the tube is by far the easier route to go down I think.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Hi there I had my feeding tube for a year and haven't heard of anyone having it so long.
I really didn't get on with it but having said that it saved my life.
Throat cancer 30 radiotherapy sessions aged 73
2 years since end of treatment
Why is he so determined to do without a tube?
Morning Mike. I didn’t have a choice, as you know. South West Wales’s policy was to fit a reactive NG. Some trusts insist a PEG is fitted before treatment starts, but a patient has the right to refuse, I guess. I know a few people who have and talking to them it’s about not giving in and retaining some modicum of control. I suppose it depends how desperate you are to go your own way. Not for me. I wanted it all over as quickly and painlessly as possible. We are all different, though
I wholeheartedly agree with you, but then we both know what the treatment is like.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi! I was also diagnosed with Tonsillar cancer last June ‘23 ( T3 N0 M0). I was 68, never been seriously ill before & had not long retired from full time work. I began chemoradiation in July, last session August 17, a date now etched in my memory cells, forever! Just before Xmas l had the scan & review signalling all clear. I am now into the 8 weekly check period. I can relate to your son’s desire. I was exactly the same & l am not sure it was entirely rational! In fact, l got through the treatment without a peg. That said, it was very difficult - especially the 2 week period post radiotherapy ( daily for 30 days, - chemo was 5 sessions ). I was an avid reader of this blog - rarely contributing ( it’s not really in my nature) but could not have done without it. I confess l had a similar reaction to the prospect of taking morphine ( mentally deciding l would not do it). I v quickly changed my mind on that! I told my Oncologist that l had a personal target to avoid having a peg . She said the team would support me on this but advise me if l needed to change course in my best interests. By the time treatment stopped & had got past the worst of it, taste etc returned quite rapidly & l am now left with a dry throat which l manage reasonably well, thanks to all the tips on here from so many fab people who know what it is like to go through this treatment. I don’t feel there is a right or wrong answer to this, and l certainly don’t regret my decision. I was never advised to think again & it worked for me. That said, it was not easy. However, l do know that if my Oncologist had intervened or advised me differently, l would have definitely changed course. Hope this helps! Wishing your son the best of luck!
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