Head & neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

To PEG or not?

Amo60
Posted by

Hello everyone.. it’s been an up and down week after being diagnosed with throat cancer hpv 16+ but thankfully caught very early with no spread.  I start 30 RT sessions next Monday. Thank you so far ... reading your posts is helping me so much more than I thought I’d need.

I was sort of talked into having a PEG fitted 4 days ago. I’ve been in pain ever since! Now I feel like ‘if I’m gonna suffer from say the second week or so from the RT effects anyway shouldn’t I have some quality pain free time now with my family?

I’m thinking of asking to have the PEG removed then deal with any feeding issues if and when they arise.. 

Really appreciate your thoughts on this. I don’t know what to do.

Thanks again all xx

AMO

Margaret853
Posted by

Hello Amo60

Sorry to hear you're having pain after having the PEG fitted.  My experience was that there was some temporary discomfort for a couple of weeks after fitting whilst everything settled down, but once that was over I was not even aware the PEG was in.  It's only my own opinion but my advice would be to ask for painkillers and stick with the PEG.

Not everyone gets problems but I was unable to eat or swallow more than a sip of water for a few weeks.  I would have been lost without the PEG.  It's important to keep up your nourishment and stop dehydration during treatment and recovery.  The PEG is so important for helping top up the calories you can't take in any other way and it can also be used for your medication.

Best wishes for your treatment.  It's good to read it was caught early with no spread.  x 

"Life might not be the party we were expecting but while we are here we should dance."

Hellebore1
Posted by

Hi Amo,

I understand your frustration at having pain from the PEG when you might not need to use it over the next few weeks. (The vast majority of people do use them) However -now its in, just keep it! I didn’t get a feeding tube (tonsil and lymph node SCC)as “time ran out to fit it” according to my team. It was incredibly stressful trying to keep eating enough calories throughout treatment to avoid the dreaded tube down the nose. And on week 7 I had to have the nasogastric-gastric feeding tube - horrid but necessary. Don’t put pressure on yourself to try and eat enough (its much harder than you  think) now that you have that tube. Be grateful that its there as a back-up and to ease the pressure on you to eat as your throat gets increasingly sore. It’s your safety rope - keep it.

Very best wishes for your treatment,

Hilary

Amo60
Posted by

Thanks Again Margaret and Hillary 

Decided to keep the PEG which is now a little better after adjustment by the nurse at the cancer hospital.  They also gave me equipment and important information on how to care for it .. something Spire failed to do. I’m so appalled at the lack of aftercare from this  private health care provider. I only went via them for speed but did expect better after care. I am so grateful to the  NHS hospital staff who are absolutely wonderful.

AMO

cameron44
Posted by

Hi

I went through chemo and radiotherapy for tonsil cancer 18 months post treatment now.

I would advise to go with the peg as for me it helped so much during and for a period after radiotherapy as eating and swallowing was an issue.You need to be strong  for your treatment and take advice from the team 're exercises for your jaw area etc as you will benefit from this in the longer time

Best wishes for your treatment and remain focused on getting well ☺

Cameron 

stchads
Posted by

Hi Amo 60. Good decision to keep PEG. The majority of people myself included on chemo/radio need PEG or in my case RIG feeding by week 3 / 4 of treatment. Everyone is different but honestly when you are undergoing treatment you dont need the extra pressure of worrying about trying to eat. Maintaining weight or not loosing too much is important during and after treatment and you can lose it quickly. You will get used to the PEG. After treatment your body will tell you when you can do without it. For some its weeks for others months. All the very best with your treatment. Small steps. You will get there.

John


Steve@45
Posted by

Hi Amo60

Really sorry to hear your unfortunate news.

My story is that the(HPV16) Primary was in my right hand side tonsil and the secondary in my lymph nodes and glands on the right side of my neck.

The peg or tube wasn't even discussed at any time with myself but I think I would have declined it then.

Surgery of a tonsilectomy and neck dissection was in September 2017 and then started 30 RT sessions from 31st October 2017

4 weeks in of the RT and I hit the wall I struggled to take my meds, drink water and as for eating anything there wasn't a chance. I ended up being admitted to hospital for 2 weeks and got a throat infection.

Whilst in hospital they tried to fit the NG tube which is in my opinion was absolutely awful and quite distressing. This failed a couple of times. I lost a total of 10kgs in 6 weeks of the RT.

Well i am 13 weeks post RT and I have gained approx 2kgs. They say it can be difficult to put the weight on after RT. So eat as much as you can now as the RT burns calories for fun.

My point is if I was offered the peg whilst in hospital I would have taken it. Everyone is different and everyone deals with it differently. You will get through this, sorry to say it will be tough at times but stay positive.


Steve@45



Amo60
Posted by

Thank you Steve.. so sorry you went thru such distress with NG tube on top of everything else!

I feel really selfish now moaning about this but am truly grateful for the advice.

AMO

Biddysmom
Posted by

Hi Amo

It looks like you have already done what I was going to suggest. I was doubled up in pain when my PEG was fitted but it turned out the bumper was too tight to my stomach and once loosened off I had immediate relief. That's the trouble, the fit it when you're lying down and your tummy flattens and should allow for this. Glad to hear you are more comfortable now. 

All the best V

"It hurts when  I do this"  "Well don't do it then"

Steve@45
Posted by

Hi AMO60

You are not selfish and you are definitely not moaning, the idea for me off these forums is for advice and for me they are really helpful.

I find it very interesting and helpful reading other people's stories but it's also very sad reading the pain and suffering what others are going through.

Everyone on here wants to help but what works for some may not work for others.

So keep fighting, stay positive, hope you are feeling better and you have a very good recovery.


Thanks Steve@45

stonedcold
Posted by

It took at least a week for the pain of having my rig fitted to subside but then as soon as the initial pain went, I’ve never had any trouble with it since and have had it in for about 2.5 months now. I never could’ve coped with an ng tube!

John67
Posted by

My understanding is that they generally will not remove the PEG before 6 weeks after fitting. From experience - and you will note the many helpful comments there have already been on this thread - an inability to take on the protein drinks orally (by reason of likely severe ulceration towards the end of treatment) may well compromise the mask fitting and potentially impact the accuracy of the beams. The PEG is in...you don't have to use it until you need to. That's how I approached it. Easy as.

John67

stchads
Posted by

Hi Stonecold.

I had the RIG for between 6-8 months. Like you getting it fitted was painful and sore but as you found that soon goes.


For me it was a lifeline and helped me reduce weight loss. When I started eating better the idea of removing it made me feel slightly anxious as I had come to rely on it. The dieticians were great. There was no pressure. And removal by district nurse was so much easier than putting it in. I actually felt nothing. The hole healed in 48 ours and leaves a very small dark mark.


For me using the RIG was the right thing. Good luck with your recovery.


John

Amo60
Posted by

Hello everyone 

Hope you are coping with whatever part of this roller coaster you’re in...

As you predicted the PEG pain has almost gone! Thank you so much for the encouraging posts. It’s such a relief to reach mid second week of RT and feeling unexpectedly good .  Thinking positive

Hugs

AMO