Feeding tube

New and lost said:

Things like do you always have one when having radiotherapy on your throat and mouth,do they put one in always before radiotherapy or do they wait. If anyone has any information on this I would be very greatfull .I have read a little about it but its bit text book and it doesn't answer my questions.

Feeding tubes aren’t compulsory. It’s always the patient’s prerogative to refuse one but bear in mind most of us get a sore mouth and throat to an extent that we can’t swallow even liquids but more important pain relief. 
Some trusts place PEGs/RIGs before treatment, some Nasogastric tubes when needed. I had one reactively at the beginning of my 4th week and it stayed in for 8 weeks. 
It would be best if you contacted your CNS to ask what the protocol is 

Hiya!

We are all very different. I had mine fitted the week after my treatment started (3rd week of August 2022) and it was taken out at the end of December 2022. It was a life saver as the side effects of radiotherapy kicked in rapidly and soon could not eat or drink. Ultimately the choice is yours. As Beesuit says, you need to contact your CNS as you just need to make an informed decision and discuss the best options for you. 

All the very best. We are all here for you. 

Fab1

Thank you for your reply it's one of many things I have that's on my mind at t he moment 

Hi my blog below might help you as it’s about my personal experiences.My trust don’t routinely fit peg feeding tubes but I consented to ng tube if needed and end of week 3 I needed it mine was my lifesaver I had it in for 6 weeks it enabled me to make a quick recovery as well. I  couldn’t swallow medication until you can’t swallow it’s hard to imagine how hard it is mine literally happened overnight I went from eating a roast lamb dinner to struggling to sip water. Of course the decision is yours  some manage without one but they are the minority .Speak with your cns nurse 

hugs Hazel 

I had surgery and radiotherapy for a tumour at the back of my tongue and a secondary in my lymph node.   My Trust fits a RIG before radiotherapy.  I remember being horrified by the idea when my oncologist recommended it.  He was 100% right.  I could have exercised my prerogative to refuse it….but I would not have got through the treatment without it. It was, literally, a life saver for me.

Good luck with your treatment.

As has been said nothing in this treatment is compulsory; it is down to your choice.  For me it was an easy choice to have a PEG fitted prior to RT starting.  I wanted the safety net of knowing I had an option if it was impossible for me to take food or hydration orally.

I found chemo caused me swallow issues a few days after it was administered for around 24 hours - no ability to swallow at all.  Thus I was grateful to already have the PEG in place and able to hydrate and feed during those times.

Aside from that I made it through to the end of treatment still eating and drinking.  After treatment I used the PEG exclusively for around 3 weeks.  I still have it in and use it very occasionally for meds, mainly as it is an easy way to keep it clean.  It will be removed in a few weeks once I have a clear post treatment scan and I know I need no further treatment.

Unlike a reactively fitted NG tube, I already had it fitted and knew how to use it so when I first ran into the post chemo issues there was not a crisis of trying to get an NG tube fitted.

Personal choice.  I hated the idea of an NG tube and the PEG has not caused me a single issue over the past 4 months.  If I went through this again I would certainly have a  PEG (or RIG) pre-fitted.

I thought I was doing well, until suddenly I hit a walI and spent 17 days in hospital with stomach problems.. malnutrition and dehydration were just 2 of my problems.. eventually I was given a soya feed, although not ideal, it was something that I could tolerate... hated every moment of it, and it was definitely one of my darker moments, but the PEG got me through.. I would advise anyone to seriously consider having a feeding tube.. if you don't need it, then all the better, but if you do, it's going to make all the difference to your recovery. You never know how this treatment is going to hit you, so take every precaution that is available to you. It won't be forever, but it could make all the difference during your treatment and recovery.

I had my Peg fitted a week before treatment started. So glad I did because it was so painful.  It’s been a life saver because I can’t cope with Ensure - the taste and smell. I had no issues eating or swallowing  but never realised just how much the Ensure affected me. 

Hi New

I had PEG fitted prior to starting ChemoRadio....spent a night in hospital for observation very little pain....next 5 days abdominal muscles gave me some mild to moderate pain ....PEG hygiene is very important to minimise the risk of infection....having said that I still required a short course of antibiotics for a site infection....believe this is very common....Feeding tube was a life saver for me....lost 16kgs very rapidly at the end of  Chemoradio...spent 12 days in hospital to stabilise my weight.

Peter

Hi

I can only talk about nasal feeding tubes. i am on a 6.5 week course of RT and chemo and they fitted a nasal feeding tube in week 3. They do it before you are not able to have one fitted as your throat may become too sore after that point. I've been told that it's definitely more a relief because if you are not able to eat then the tube will relieve the hunger which can be very debilitating and you need to make sure you are not losing weight.

I am now in week 5 and I can still eat and drink, with varying degrees  of difficulty, using fortisips to bolster the calories. I am half expecting it to get really bad next week and and then the feeding tube will be a life saver. I must admit I did have a bit of a cry when they fitted it but needs must. Of all the things you go through, the feeding tube is probably one of the more minor ones.