Just about to start treatment, hi everyone

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Hello everyone, 

I found a lump in my neck a few months ago. Fast forward through my GP appointment to meeting with my ENT consultant, I have been diagnosed with T1N1M0 HPV + head and neck cancer. The primary site is the right tonsil and the lump in my neck was my lymph nodes (1 main one and what I have been told were two ‘angry friends’). 

I have had my CT/MRI/PET scans and have been at the QEUH in Glasgow for a meeting and have another one next week. From speaking with the head and neck cancer nurses (who are saints) I think the plan for me is for the consultant to put me under to explore the area around the primary site, possibly remove the right tonsil there and then and afterwards, move me on to 2 rounds of chemotherapy and 30 rounds of radiotherapy. There was initially talk of a neck dissection but I’m not sure if that’s going to happen or they may wait for this treatment to take place first and see how the lymph nodes look after all that. 

I’ll not lie, it’s a daunting prospect but I have to get on with it. I’m 38 and up until now have always felt that I am healthy and active. That’s life I guess! Anyway, I’ve taken a good bit of inspiration from some of the stories on here and some of the tips are great and I’ll take these on board. 

all the best,

Chris 

  • Hi Chris 

    T2N1M0 Tonsil cancer HPV16+ chemoradio finished in early June 2023.

    Good luck with the treatment, it is pretty daunting, though not everyone gets the harsh side effects, some get off relatively lightly, treatment outcome is very good, around 90% success rate.

    I was 68 at the start of treatment with a few issues but managed OK, been on some sunshine breaks since finishing....so the treatment is very doable.

    Have you been offered a PEG feeding tube? eating can become very difficult after weeks 2-3 of Chemoradio 

    Take care and best of luck 

    Peter 

  • Welcome Chris. Glad you’ve already had a look around. Stay with us. You’ll have lots of questions on the way and somebody here will have an answer. We are good at listening here. 
    It’s a very challenging treatment but it cures us. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Hi Peter,

    I haven’t been offered the PEG tube yet, but I will have no issues in accepting it if the swallowing becomes an issue. I would personally probably prefer that over the nose tube, which my consultant could probably attest to after she stuck the camera scope up my nose and down the throat several weeks ago Joy

    Thanks for the reply and I’ll keep everyone posted as I go along with this.

  • I would personally probably prefer that over the nose tube, which my consultant could probably attest to after she stuck the camera scope up my nose and down the throat several weeks ago

    Honestly. It’s not the same. It’s just fleeting discomfort as it passes through the back of your nose. It’s not as thick as an endoscope. I had one for 8 weeks and it saved me. 
    A PEG takes a   couple of weeks to settle for most folk. Something worth thinking about  when you are in enough pain to prevent swallowing. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi Chris, All the best with your treatment, you will be in very good hands, always tell your team of any worries, and let them know of any side effects, they will give you something for them. Any worries or questions just ask, we are here to help. Be assured the treatment does give very high cure rates. Stick with us.

    Ray

  • Hi Chris welcome from me 6 years post chemo and radiotherapy for tonsil cancer with 7 affected lymph nodes. I was 61 when diagnosed it’s. pretty brutal but if I can do it anyone can. Take it one day at a time any questions just ask. We’re a small friendly bunch always happy to help.the n g  tube isn’t that bad I had 2 on treatment and the last one I pulled out myself. Mine was in for 6 weeks. 
    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 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Chris and welcome from me.

    Looks like you are preparing well for the oncoming treatment and recovery.  It is not easy, but in the end it is worth it.  I would echo Peter E in getting a PEG.  I insisted on one and had absolutely no trouble with it.  I could not face the thought of an NG tube; each to their own.  Neither is right or wrong.  Ask any questions you like, now or during treatment/recovery.  We all have different experiences and someone will have an answer that works for you.

    Peter
    See my profile for more details of my convoluted journey
  • Hi Chris, just completed radio/chemotherapy for tonsil cancer and awaiting all clear, touchwood. The radiotherapy did cause some quite acute side effects, but the oncology team at NUH Nottingham are fantastic. Apparently, success rate of cure is very high (hopefully).

  • Hi Chris,I had cancer in the left tonsil and they decided against removal because it spread to the pallet and uvula,I had radiation on both sides of neck and Chemo.Had 30 treatments of radiation myself.I chose to eat through the process and glad I did.I am self employed so how hard I worked was up to me though.I worked everyday except chemo days.I was back working 10 hours a day 75 days after treatment ended.The biggest problem I have still is energy,I do get tired at the end of the week.Good luck with treatment