Question about PEG feeding tube in HNSCC type cancer

[CaptainAustrali]

I've been diagnosed with a large but treatable cancer on my tonsil, abutting my jaw and soft palate (and in adjacent lymph node) The treatment plan is a 7 week course of radio/chemo, with optimistic chances for survival and cure. My question relates to a prophylactic PEG insertion, which the medical team are recommending in case it becomes hard to take nutrition/hydration later in the therapy. Can anyone who has had a similar treatment plan consider my questions please ? How hard did it become to eat, what week did the blistering & cysts start ? Did you do the chewing and swallowing exercises throughout radiotherapy ? How long did the difficulty last ? Did you consider a naso-gastric intubation in leiu of a PEG ? If anyone has had naso-gastric feeding can they describe the experience ? If anyone has had a PEG insertion can they describe that ? Were there complications with either ? I don't like that most PEG insertions (somewhere in the neighbourhood of half) have some kind of complication, and of complications 12% of them appear to be serious .. and of those some can be fatal. I'd like to approach my therapy in a more reactive way re: nourishment. If in the latter part I can no longer eat/drink, I'd seek insertion of a naso-gastric tube, and avoid the PEG altogether. I'm strong, young(ish) 44, and have a higher than normal tolerance to pain. Any patient or clinical advice on this would really be appreciated. Thanks & Regards Simon

[Karen_Rose]

I had a PEG feeding tube for 3 ½ years. Having a PEG inserted was just another helpful tool during a difficult time for me. Tough or not doesn’t come into it when you can’t swallow due to treatments. My approach was if a PEG will ensure my nutrition and hydration levels are looked after – I will go with it – it’s only short term or temporary (unlike some patients who lose total function due to surgery etc) PEG feeding tubes also help with medication intake. Nine years on and I still can’t swallow tablets of any form – liquid only for me. Everyone is different and depending where and how much treatment you receive, radiotherapy combined with chemotherapy can be tough. In 3 ½ years I didn’t have one drama with my PEG . Good luck with your treatments.

[CaptainAustrali]

Thanks very much for the reply, Karen. My primary concern is whether I can rely on naso-gastric enteral feeding instead of a PEG. The surgery (like any surgery) carries a risk of complications, and based on some of the scientific studies I've been looking at, it seems to indicate that naso-gastric is the lower risk option (if it's viable for someone undergoing HNSCC radio/chemo) According to one study, 25% of PEG insertions have complications. 88% of those complications are minor, but 12% are serious (and can even escalate to fatal) That means (if correct, and it was on PubMed) that for every 100 PEG insertions, 25 people need intervention (antibiotics or repositioning or whatnot) and roughly 3 have very serious complications. I've accepted the numbers on my cancer and treatment path, this PEG insertion issue is my only real hurdle before I can call everything mentally locked in. I'll ask my doctors, but my hope is that in lieu of a prophylactic PEG (as a precaution in case I need it), I can go through the therapy, and get intubated through the nose if I can't take food/water by mouth for a period. But yeah ... 3.5 years is a long time. Thanks for the insight, again.

[Karen_Rose]

Hi Simon, Nasal tubes are probably ideal for very short term use. Meaning…If you can swallow but might need hydration and nutritional drinks every couple of days. Nasal tubes are narrow so I wouldn’t depend on it for juicing or thick soup type liquids - you would have to add loads of water and that's no good if you can't be bothered - after a couple of weeks treatments can be exhausting. Before, and after radiotherapy/chemotherapy I underwent major surgery in and around my mouth cavity and jaw requiring a tracheostomy for breathing. Basically I couldn’t swallow via mouth for months, so a PEG tube was right for me. If your specialists believe a nasal tube would be sufficient throughout treatments, then I would listen to them and go with that. Radiotherapy has come a long way since I had treatments in 2007. Hopefully with better treatments comes less side effects. Take care

[Jules2]

Hi Simon I had both a nasal gastric tube and peg. The peg was much easier and quicker to use pluw not visible to everyone. I actually had mine before treatment as my tumour was preventing me from swallowing. I managed to eat all through treatment, but this is not alwayw the norm. Foods that I found easy to eat were eggs, tinned peaches and tinned spqghetti - pretty bland I suppose but it got me through. All the best Julie

[CaptainAustrali]

Hey, I thought I'd add a supplemental remark, if anybody finds themselves in a similar boat, researching whether or not to get a PEG inserted.

(I've finished my treatment and am now in the side effects phase)

I'd say, confidently, that getting the PEG was the best decision and without it I'd probably be suffering some pretty serious medical problems that could even have disrupted therapy.

I had some minor complications (massive fever spike after surgery, and much later a minor stoma infection treated with topical antibiotics), and even so have absolutely no regret with the decision to get a PEG.

Head & Neck Cancers are among the worst for side effects, and it's indicated that close to 100% will suffer some degree of mucositis, loss of taste, dysgeusia (distortion of taste so stuff tastes like metal, wood chips or poo), pain in the mouth, tongue & throat.

I couldn't eat by mouth for close to 3 months (and counting, I'm only tentatively starting again now).  Without a PEG tube, my overall suffering level would have gone up dramatically.

If you're researching and looking for a testimonial:  I say yes, get the PEG tube in, any risk is offset by what a dramatically important tool it will be in your treatment & recovery.

[CaptainAustrali]

One little addendum on PEG tubes, in case this is ever of any future use to somebody grappling with the same set of decisions I did.

I had my PEG removed today, as I've been pushing myself pretty hard to take food & liquid by mouth.  Still not really successful with food, but I can take liquid even if it sometimes hurts or is mucousy - so anything that I would put into the PEG tube I can now take by mouth.

When they pull the tube out, it has this inverted rubber seal on the inside of your stomach that kind of collapses - basically it's a little like this:

=============II={

(With the === representing the tube and the II representing your tummy and { being the plug that is inside your tummy holding the peg in place)

Basically they grab the tube, double wrap it around their fist and give a long hard yank.

For me it hurt like the blazes, well .. maybe a level 7, followed by a minute or two of level 4-5 stinging.

Apparently, sometimes the plug wont collapse properly and come through the stoma hole, and in the old days they'd let you poo it out - but supposedly that's not safe - so if it does break off they have to go in with a scope and recover it - but it's quite uncommon.

Also sometimes the plug, when it's yanked, can damage a blood vessel inside your stomach, and cause internal bleeding, which could have you wind up in the emergency room (again uncommon).

So, getting the PEG out is a minor ordeal, some pain, but overall no biggie (if you've been dealing with cancer treatments you're tough as nails, right?).

I stand by the earlier endorsement that if you're getting radiation treatment for head and neck cancer ..... get the PEG, you're quite likely to need it.

[April-Showers]

Good news Simon.....hopefully you will return to solid food soon. How are you managing those awful peg feeding packs?....I was offered them to take orally and they taste vile!
April

[CaptainAustrali]

The hospital dieticians suggested a drink called "fortisip" .. I don't know about any special PEG packs.  The fortisip did taste a bit rich and unpleasant to me, so instead I went to Chemist Warehouse and bought "Sustagen Hospital Strength with Fibre", it comes in a container just like baby formula .. you basically mix 3 scoops of powder with milk and make a milkshake which has protein and nutrition.

Because you need extra protein when the body is healing or under duress (they say 2 grams for every kilo of bodyweight is ideal), I also got one of those max protein powders that bodybuilders use - two shakes of that stuff per day was good for 70g of protein in itself.

The sustagen tastes pretty good, but now that I'm drinking, I'm mixing in fruit, yoghurt, custard, other stuff to make up calories and protein.

[April-Showers]

That's great to hear Simon.

The fortsip drinks are palatable, but I know taste can be a very individual thing...did you try different flavours?  Chocoloate or vanilla?  I totally agree with you about sustagen I find it palatable and very easy to get down.  In week 3 I started how you are ending now using sustagen as base for mixing in other ingredients.  You can get the fozen fruits like mango, berries etc and blend them in too...they taste great, soothe the throat and offer a bit of variety on what is a very very limited diet.

Can you talk to your dietician about getting the sustagen from them?  I was gettting it reduced at the hospital pharmacy but once other options of nutrition were eliminated my dietician said they will provide it for me.  It is worth asking about.....You may need to be drinking it for a bit it can get really expensive.