Hi I had a biopsy but didn’t take tonsi out. Different trusts are different policies with regarding removal of tonsils they came out on the radiotherapy melted mine along with my Ohelo, which is a dangling bit at the back of your throat. How am I doing? I’m doing fine. I’m six years past treatment. I do everything that I did before and only thing that I can’t do is I can’t eat anything spicy and I don’t drink alcohol my mouth just kind of tolerate wine, et cetera. I am the exception on that one most people to get a taste back that they can have the odd or drink. my oncologist said he was going to take me as low as it possibly could and it was right that one. He also said he would cure me and he was tight that one. I can’t lie treatment is hard but as I said before, if I can do it anyone can and I was a wimp.i gad 35 radiotherapy snd 2 of s planned 3 chemo. Best advice i so I can give you is take whatever medication they give you if they offer you a peg feeding tube take it if not you could be like I was and I had an NG tube week three of treatment and I took it out of recovery and until you can’t swallow as much as a sick of water is hard to comprehend some get through without having a feeding tube but it’s very few and far between.
Dont fear the treatment we’re lucky in a way our cancers are eminently curable. I was at Leeds cancer dented where are you ? Xx
I'm in Maidstone kent and thank you for advice it's really encouraging. Taking one day at time .how did you find out you had cancer I just found a lump in my neck thought it gland no pain no symptoms at all xx
Hi the same I was in Spain cycling was fir don’t smoke don’t drink I lump in my collarbone area appeared I thought I had pulled a muscle umm how wrong was I fat forward 8; weeks aprox when we came home a firms suggested I see the g p. I did and 5 mins later was in teh 14 day cancer pathway. I was diagnosed 6 June 2018;treatment started 14 July 2018 finished 31 augustb2018. But I flew to Spain 25 October 2018 hard but I did it. I’m a glass half full I’m very positive I was positive it wasn’t going to get me. I now do lots of chairing work promoting the HPV vaccine and working with a cancer charity details in my blog. Hazle
My dad was diagnosed with tonsil cancer in March last year after also finding a lump in his neck.
First of all let me say 16 months on he is doing absolutely fantastically well, and apart from his 8/10 weekly check ups, normal life has resumed for us all so there is life after your diagnosis. You probably feel all kinds of terrified at the moment but I hope that my dad’s story makes you feel better.
Dad had a tonsillectomy which was for biopsy purposes and was then told his cancer was classed as stage 1 (despite the spread to the neck because this is a common first spread and does not affect the treatment plan or effectiveness of treatment). He then had a neck dissection and further surgery to remove tissue around the tonsils to ensure all the cancer was removed, which it was. He then had six weeks of adjuvant radiotherapy (5 days a week) as a belt and braces approach.
I’m happy to answer any questions you might have or give any support you need. It’s a scary time but Dad is really healthy today so keep the faith
Many thanks for you post it is of great hope . Received my op date today 2 weeks and counting x not had much discomfort until today not sure if its normal as nothing previous apart from after biopsy. So happy to hear dad doing well. I feel gor our family and friends as difficult for you all as for us x
Hi don’t worry it’s gold standard protocol now for the neck lymph node be blasted with chemo radiotherapy remember I had 7 affected lymph nodes radiotherapy got rid of them. Trust your team they do it regularly. Some trusts do nrck dissections but most don’t. Don’t worry. I’m 6 years post chemo radiotherapy
Ah yes that’s the same as with my Dad. They took the tonsils first, then he had the robotic surgery to clean up the back of the throat and a neck dissection a few weeks later.
it’s extremely confusing and I remember feeling very unsure about the next steps. What I learned though is that it’s confusing to you because it’s routine for them. When something steps outside of the norm (for example, my dad had an issue with the first biopsy being negative so they had to change the approach) that’s when you get more clarity and detail. So if you’re feeling like all the information is a bit vague it’s probably because it’s all just progressing exactly as they expect it will.
tonsil cancer is very predictable as far as we’ve been told and responds very well to treatment, which is really positive x
