Hello

Hi ginge_1969 and welcome to our little group. so sorry you are having to endure treatment yet again.

I had a nasogastric tube in place for eight weeks for my radiotherapy. Many people here have gastrostomy tubes, PEG and RIG which are placed directly into the stomach. By far the most are not permanent. I have a friend Panch who has had the same op as is planned for you. I'll see if she is around to have a quick word. 

Thanks 

There is a really good supportive group called young tongues you might look at too https://www.youngtonguesglobal.com/ 

Hi ginge_1969, sorry you are having to go through all this again. Don't worry about having a feeding tube, I had a RIG fitted which is very similar to a PEG. You have it done under sedation, then an overnight stay in hospital, they take a few days to settle down. You will be shown how to flush and how to use it, which you will quickly get used to. They can be a real lifesaver, I was 100% reliant on mine three weeks into my treatment and used it for about ten weeks. They really are good to have to get you through the treatment.

Ray. 

Thanks, appreciate the reply. 

Hi and welcome.  Sorry to hear your news after such along time after your original diagnosis which i assume is rare?  I cannot offer any advice on your treatment as like you I've only had surgery.   The other guys are a mind of information and try and keep away from doctor google!  I hope you don't mind me asking but had you been discharged when  you found the second lump?

I was very nearly discharged at the ten year mark, but I had a tiny white patch they needed to biopsy which turned out to be nothing. They decided to keep me on annual review which was just a ten minute visual check. I believe that if this hadn't happened my next scheduled annual check would've been the last. 

Fully agree about Google. 'Cyberchondria' is definitely a thing. 

I think the thing with Google is the information is normally out of date and confusing to say the least.   In March I was moved to six monthly check ups but told to contact my surgeon if I had any problems in between.   I've noticed some discolouration underneath my tounge and lost my sense of taste about 10 days ago and had intermittent pins and needles so before I go the whole hog and contact the hospital I've arranged to go and see my dentist.

1. Hi ginge_1969,

So sorry to hear about your second diagnosis Im sure it’s been a shock to the system again x

As for the feeding tube like Ray said mine was a lifesaver .. I didn’t want it but so glad I did!

There are four types PEG and PIGG nearly same RIG and NG tube take a look at this nhs site it explains them all 

https://www.nbt.nhs.uk/our-services/a-z-services/nutrition-dietetics/nutrition-dietetics-patient-information/peg-pigg-rig

Some people don’t even remember having theirs inserted , sadly I did it was painful first few days took buscopan straight after helped with cramping. Second week it was uncomfortable third week fine. Its second nature now two ways to feed bolus hold tube up in hand ( faster) or via pump can be done overnight or carried in special rucksack good if you need flow control.

Im 7.5 mths post treatment and finaly able to take feed via mouth so hoping PIGG will be removed in a month Feed Nurses will support you all the way but very impostant to keep it clean and tell them if it’s uncomfortable may need lostening (if PEG/PIGG.

Debbie

Mick 28.12.22 said:

I think the thing with Google is the information is normally out of date

Google is a useful tool but you have to know what you are looking for. There are many many current scientific papers out there with a plethora of HNC trials already reporting. Always look at the date of the publication.