Throat and neck cancer (base of tongue, lymph nodes) - told I'll never swallow again?

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Hi, just wondered if anyone else as suffered with base of tounge , and cancer in lymph nodes in the neck, radiotherapy got rid of the base of tounge cancer, but came back in lymph nodes in my neck, drug trial seems to be reducing that, but have had nothing by mouth since Dec 2020, everything by peg, been told won’t be able to swallow ever again, just wondered if anyone else in same boat, thanks

old biker 21 days ago

Hi Neil, sorry to hear you have been given this information. There are a few members on this forum who are permanently PEG or RIG fed, who seem to get on really well with it. Hopefully one or two of them will come along and share their experience with you.

Ray.

Lonewolf81 21 days ago in reply to old biker

Hi Old Biker, it's a Brutal outcome yes but it's possible to live with.

Trust me I have the exact same issue. They told me before Surgery I may never speak again also but thankfully I can speak.

I found the first year extremely hard and was trying to eat little bits but it just gave me Aspiration Pneumonia each time and that can be fatal.

I'm nearly 7 years from Diagnosis now and my advice is get some Trauma counselling in place from your Macmillan team.

It's a major life drive eating and having to train your Brain to not eat is hard believe me.

After a year for me it got easier for me as I simply accepted it that I couldn't swallow safely.

I can't even suck sweets due to the risk of Aspiration.

The surgery to get the Tumour from under my Tongue damaged my soft pallete so anything goes past it and straight to my lungs and forms and infection.

I'm sorry to hear your plight buddy, it's a Brutal outcome indeed.

Try and remember the things you CAN still do. For me it's Ride my Bike, I'm a Biker too!, play Snooker, see my friends,do my Adult colouring books and much more!!

Message me if you need to my friend, just ask for my number bud.

I recommend you join the Facebook group I'll tell you about in my next message,I've forgotten the full name for now lol! Take care buddy, Wayne.

Steph - Online Community Team 21 days ago in reply to Lonewolf81

Hi there, it's Steph from the Community team.

Wayne is experiencing some issues logging in, so asked me to share the details of the support group.

Mouth Cancer Foundation offer group support through Zoom meetings and a closed Facebook group. You can find all the details on their website here.

You might also contact the Macmillan Support Line for ongoing support and help finding other services. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

Steph (pronouns: she/her)

Online Community Officer

Beesuit 21 days ago

Neil3507 said:
just wondered if anyone else in same boat, thanks

Hi Neil.One of our ex Community Champs Chris has been PEG fed for six years. Have a look at his profile HERE

I'm sure he will be along soon with some wise words and reassurance

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

Macmillan Support Line - 0808 808 00 00 7 days a week between 8am-8pm

old biker 21 days ago in reply to Lonewolf81

Hi Lonewolf81, I think you have answered my reply instead of Neil's post. Although I'm sure what you have written will be reassuring and helpful for him. All the best.

Ray.

Lonewolf81 21 days ago in reply to old biker

Thanks Ray,I wasn't aware of this mistake.

I've been having trouble logging in but I'm on now

Lonewolf81 21 days ago in reply to Steph - Online Community Team

Thank you Steph. I'm on now and that's very kind and useful for you to post the details.

It's an excellent support group as is this.

Thanks again, Wayne

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Throat and neck cancer (base of tongue, lymph nodes) - told I'll never swallow again?