Tonsil cancer after finding lump in neck

Diagnosed yesterday didn't even know cancer of tonsils was a thing

  • 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 Penguin, I'm so sorry you've been diagnosed with tonsil cancer. Going by my own experiences (I have sinonasal cancer and I'm starting treatment on July 8th) you will be going through a range of emotions and have loads of appointments for scans etc and it will be difficult to get your head around it all. I read what Radioactiveraz said, and although it may be too soon for you, I want to direct you to a documentary made by the comedian Rhod Gilbert about his own experience with HPV related tonsil cancer. I watched it because it is about treatment for head and neck cancer, so it was relevant to me, and although it shows the reality of treatment and how hard it is, it's very uplifting and positive (and very funny at times!) and he's come through it and is well again. I watched it with my husband and Dad as we were all quite naive about what radiotherapy/chemotherapy would involve and it was very informative on that count too. I felt so positive after watching it, and I wish that for you. 

    If you want to watch it, go to channel 4, type in 'Stand up to cancer' and there's a collection of programmes (which I haven't watched, so can't say anything on those) and his documentary will be there. If you watch, I hope it gives you the comfort it gave me.

    All the best to you 

  • Thank you certainly something to watch good luck 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 

  • Hi Penguin

    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

  • You are welcome! I wished we’d heard some positive stories at the beginning which is why I want to share now it’s all behind us.

    Are you having a neck dissection? Hope you’re feeling okay about it. It’s scary but they know what they’re doing.

    it’s hard on everyone but lean on your loved ones and just tell them how you feel. That’s the most important thing, keep talking x

  • Been told just removing tonsils to start but not lump in neck it's all very confusing x