Just saying Hi and to introduce myself…
I was diagnosed in March with tonsil cancer after I found a lump in my neck in December 2024, biopsy showed cancer in my neck lymph nodes, this was not the primary, sent for a PET scan, nothing came back, they couldn’t find anything, the following week I was having a procedure to take biopsies from the tongue tonsil and throat, fortunately ( or unfortunately ) they saw that the right tonsil looked suspect and removed it, they didn't feel the need to take anymore sample’s, just as well as I've heard it can be quite painful taking samples from the tongue, removing the tonsils left me very sore for about 3 weeks and not able to eat or drink that well..
The right tonsil was the primary cancer.
That was back in March, I start my 6 weeks of radiotherapy treatment to the neck and throat area this Monday 19th….
Any advice on looking after myself to reduce any side affects I may experience during those 6 weeks. ?
I’ve been told worst case scenario side-effects, and that it doesn’t happen to everyone, I would like to be one step ahead if I can so any advice would be welcome.
Wodger..
(From Surrey)
Hi
I’m similar to you in that my lymph node lump was removed along with 41 others and I had surgery to the left tonsil twice. It was all removed with good margins.
I finished my RT on feb 26th.
I can share my experience of RT but not chemo. I only had 6 weeks of RT.
I had read quite a few people saying it was brutal etc and it did frighten me I must say. However it certainly wasn’t that way for me. I seemed to sail through it. No fatigue etc. even now. Couple of issues with mucousitis but nothing much. Left with a little bit of lymphoedema which I have massages for. I’m back to eating kfc zingerburger meals. Have to have a drink with everything though due to dry mouth. I was lucky and never had any teeth out either prior to RT.
We’re all different. Some suffer more than others. Pain thresholds differ too.
one thing I will advise. Apply flamigel about 4 to 6 times daily. I never had any burns at all and I put it down to my constant use of flamigel.
I used to count down my RT sessions one by one. It really helped. Also if you can get the taxi service provided by the hospital then do it. I met so many lovely characters and all with their own tale to tell.
You can do this!!
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi wogerv. Welcome to the club nine if us wanted to join neverless 7 years later here I am Tonsil cancer 7 affected lymph nodes living a great life. We are all told the list of side effects rarely get all of them. My blog below might help. Top tip keep,off dr Google and if offered a feeding tube take it no,point in trying to eat as it’s hard to imagine but many of us wake one day and we’ve gone from being able to eat to nithung nit even water. I had ng feeding tube was my lifesaver and enabled me to make a good recovery.
my trust don’t routinely fir peg feeding but I had to agree to a ng tube if needed and it was needed.
Any questions just ask someone’s usually for the answer Are yiu HPV positive that’s a question to ask consultant
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Wodger. Your story sounds very similar to mine, lymph node lump, tonsil was found as my primary site. Surgery for both the tonsil and the neck dissection followed by 30 RT.
I, like Sooh4496, seemed to get through RT relatively unscathed. I was tired from the constant back and forth to the Beatson for 6 weeks and I had a bit of a redness to the right side of the neck where I got the RT. Other than that, I lost my taste but rammed food down to keep the the weight on. I was given flamigel and applied that 3 times a day.
That said, everyone is different and don’t be brave throughout it if you’re struggling. It’s a hell of a shock to the body and system. Speak to your CNS if you have issues and they’ll address it for you pretty quickly. Don’t let pride get in the way, ask for help. There are wonderful people in the NHS and indeed on here who will be all too happy to support you
Hello Wodger
I had similar diagnosis but the primary was found in base of tongue, I'd had my tonsils out in childhood. I didn't have to have surgery, I had 6 weeks of chemoradiotherapy which did get tough but I'm fine now. The doctors have to tell you all the possible side effects for informed consent, but most people don't get most of them or only temporarily.
My advice for what it's worth: get through it one day at a time, take all the help and meds you need, drink lots of water - even when it gets difficult to swallow (fluids fluids fluids, my oncologist said) - and do your throat and swallowing exercises. Good luck! We're here for you.
Catriona
September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Now over 2 years all clear. See my profile for longer story
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