Hi
I had a phone call 31/12 - abnormal cells in soft palate and lymph node, abnormal Cells and some I believe cancerous cells from tonsil biopsy. Consultant said they would therefore be treating all as cancer. No options for surgery in soft palate so radiotherapy… seeing oncologist 7/1/25.
I have no idea what to expect. I’ve looked at all of the side effects on nhs website and read a few posts describing treatment as brutal. Just thought I’d come on here and say hi.
Think I’m getting a reality check here. Assumed I’d have a few weeks treatment then toddle off back to work. I’m thonking there will not be any hiding this or rather playing it down for my 10 year old. I’m feeling sad for both of us today x
I really hate that word brutal. It’s enough to put anyone off having treatment. I’ve researched and not everyone finds it incredibly hard believe me. We’re all different. I’ve spoken to specialised nurses who’ve said they’ve had patients saying they don’t know what the fuss was all about while others do struggle. Think we need to wait and see. Be prepared but not over pessimistic. Take one day at a time. Even oncologists look on the dark side of side effects because even they don’t know how a person reacts. You’ve got this!
I really hate that word brutal. It’s enough to put anyone off having treatment.
Yes indeed. That’s what worries me too because although there is no sugar coating the treatment effects they really are manageable. I’m not saying I didn’t struggle. I did in my head. I had a few meltdowns at the unfairness of it all but there was never a time I considered throwing in the towel. Yes there was pain but the pain killers kept it all bearable. I tube fed and didn’t fight not being in control. It passed.
There was a huge amount of support here from some people who are still here and others who have moved on. Peer support is huge!
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Think I’m getting a reality check here. Assumed I’d have a few weeks treatment then toddle off back to work. I’m thonking there will not be any hiding this or rather playing it down for my 10 year old. I’m feeling sad for both of us today x
My oncologist told me the cancer would take a year out of my life but that he would cure me. It did and he did. By 12 weeks after treatment I was eating and by six months I was well on the way to being a pretty good version of who I always was.
Children are pretty resilient. The cure rates for this cancer are in excess of 90% and if you can say that mum will be pretty poorly but will get better I’m sure your ten year old will surprise you.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Yes agreed. Tbh when I heard that word it very nearly made me say no to RT. The oncologist said I won’t need admitting to hospital. I will have a very sore throat on one side. Much like when I had my tonsil out ouch! I’ll be fatigued and feel poorly probs from the third week of the 6 weeks. She said she will try to limit the dose on my saliva glands as I’m having dry mouth now. But I will be able to eat on my right side so no feeding tube. I will lose my taste and won’t be able to eat certain foods especially chocolate. Some people have said they’ve found the surgery worse than the RT. I’ve had 2 so am hoping it’s true in my case too. Peer advice is essential but I think the word brutal needs to be barred. It conjure up a terrible picture
As stated everyone does not suffer badly from the after effects of RT, some do get off relatively lightly....the language used during the explanation of the treatment to patients is somewhat scary....frightened the life out of me...maybe needs looking at by our teams ....could cause some unnecessary mental problems for some patients....the alternative to forgoing treatment is even scarier....RT is tough going but very doable.
Peter
.the language used to describe the treatment to me at diagnosis was even scarier....so much so that I would not repeat it on the forum
Precisely why it’s so stupid. I don’t know why some medics use it.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi don’t feel sad treatment certainly beats the alternative. Our grandson was 7 we never used the word cancer just that man’s had a sore throat and the hospital was going to make me better but I would be poorly before I got better. He helped with my n g feeding tube he used to help his grandad do my p h readings and he set my feeding bag up for me he even tasted it and said yuck. We will all help you. We’re a safe place to rant as well we never judge.
Hazel x
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
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