Good morning,
I'm having my PEG/ RIG fitted in wk3 of treatment rather than before it starts - did many others have it fitted mid treatment? The team must be anticipating that I'll be able to manage food in the first 2 weeks. It will be fitted on one of my RT weeks (between chemo sessions). I've been told I'll have the RT as usual in the morning, then have the tube fitted in the afternoon and stay in hospital overnight. The team is then swapping my next day's RT to the afternoon so that I can spend the morning with a team to train me on using the tube and talk about eating all things nutrition. Sounds reasonable - just wanted to check if anyone else had a similar timetable?
Thanks as ever, Helen x
I had a feeding tube fitted in week 4, a Nasogastric tube. Couldn't be done with having a stomach tube fitted then. I wonder why they are doing it that way. I'd ask for a reactive NG tube if it was me...but then that's me.
Where are you being treated, Helen?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Dani - I'm being treated with all RT & chemo in North Wales, Glan Clwyd (near St Asaph) as it's the N-Wales Cancer Centre, so everyone has to travel there; but I'm with Wrexham Maelor Hospital (part of same health board) and Wrexham Spire Yale (private) for consultations and everything else.
I did wonder - but the nurse seemed very confident about it... They wanted to try and keep my start date on 20 June. Yes, I'll ask for NG tube if I need it, or if the PEG can't be fitted for whatever reason. I'm seeing the PEG pre-op team on June 28th so I'll be able to question them then.
Helen x
Hi Helen I had a RIG fitted before the start of my treatment, maybe it is just the way they do it at the hospital you are attending, some hospitals don't offer a RIG or PEG, so they are all different. If when the times comes you could always ask about a NG tube, if you are not happy about having a PEG. All the best.
Regards Ray.
H8 Helen ditto like Dani I had ng tube fitted start of week 3. Don’t think I would have coped with one fitted part way through treatment. Check that is a peg/ rig and not a NG. I can’t think of many who in last 4 years had a stomach tube fitted part way through treatment. A NG tube yes as far less discomfort and easy to learn how to use. I had mine fitted in mornjng after radio and home by tea time fully trained.
Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Thanks Ray. Yes, I thought they'd do it before I started treatment but maybe that would delay things .... and as you say everywhere does things a little differently. I suppose I'm worried that I may be weaker by wk3 so it seems counter-productive to have them messing around with local anesthetic and doing something invasive at that point! Maybe I'm worrying unnecessarily. But I'm going to call my head & neck cancer nurse on Monday and ask questions in hope she'll allay my fears! I've read that it causes bloating and cramps initially to so that's not exactly going to be welcome when I'm having RT!
Helen x
Thanks for replying Hazel - that's what I'm thinking. Why put extra pressure on my body?! It is definitely a RIG she told me and with an overnight stay. But I'll speak to her on Monday and tell her my concerns. If it meant pushing start date back a week to 27th then I'd rather that! But maybe I don't have a choice. I am going to say I'm very nervous, based on experiences I've read about how people are feeling by that stage of treatment so what is their reasoning behind it!
Helen x
Hi Helen The NG tube literally takes minutes to insert providing you’ve a good nurse. I had 2 fitted one start if week 4 and other just as treatment finished. Both times no pain or discomfort so to speak. Yes question their thinking.
Personally I would push for NG tube easier ti get rid iff as well. I took mine out week 3 recovery as I kept uo with swallow exercise and made sure I could swallow orally before it came out. Maybe they are thinking peg is less visible for Stanley ? With our grandson 7 at the time we showed him what it did offered him a taste of food he said no thanks and shrugged it off never asked about it again.
Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
But I'm going to call my head & neck cancer nurse on Monday and ask questions in hope she'll allay my fears! I've read that it causes bloating and cramps initially to so that's not exactly going to be welcome when I'm having RT!
That’s exactly why I wondered but I didn’t want to alarm you. Lots of folk have taken a week or two to settle down. Do you really want that when you’re coping with treatment?
Fingers crossed though that the propolis you are taking means you won’t have much of a problem xx
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hey I'm 9 weeks post treatment, and i still have to use the tube twice a day. I had mine fitted 3 weeks before trestment started, and gkad i did as it was quite painful after it was fitted for about 2 weeks I was able to ear up untill the middle of week 4 then was dependent on the tube. Hope all you're treatment goes well, you will smash it .xx
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