Oropharyngeal Cancer Confirmed (partner)

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Hi everyone, my partner had his results appointment today and it is HPV+ Oropharyngeal, T4N1M0 on base of tongue with radiotherapy/chemo as treatment.  We have another appointment tomorrow after the MDT to go through treatment plan in more detail.  We're very pleased (if that's the right word to use!) that it's HPV + and whilst the treatment won't be a walk in the park, it's better than the alternative.  They did say the scan showed an incidental lesion on an adrenal gland but it's very rare for it to be anything related and is very often benign but have referred to adrenal MDT 'in the background'.  Consultant said he wasn't worried so we're not either.

A tough few months ahead but an excuse to eat plenty of chocolate and yummy things during December!  Thanks for all your reassuring posts, it definitely helped while we were waiting and the consultant/nurse seemed fairly surprised that we started talking about the TNM staging system and treatment success rates before they did lol!

  • I haven't been on this forum since I've been in remission from this diagnosis 2 years ago. i even forgot my user name in the meantime... Thanks to the "gruelling" treatment for my throat and soft palate HPV positive diagnosis, I am pleased to say it was totally worth what I went through. In my case I did lose quite a bit of weight and am also pleased to say I have maintained my size at end of treatment. Which is smaller than prior to treatment. I will admit that there were times during and after treatment initially when I wondered whether this was the quality of life I wanted. And it was not. However, I am still alive and grateful for every moment I have ahead.The only piece of unasked for advice I was told and ignored was to get a tube into my stomach at the start of treatment. I ignored this advice in my stubborn way and was very sorry I did ignnore it as I had to get it anyway and I simply could not have lived without it. I do not regret the pain medications I was prescribed and had no problems getting off them ( fentynal and hydromorphone) when I no longer needed them. by several months post treatment I was able to eat and drink fairly well and by now of course I have no difficulty eating foods including crunchy granola. I do wish you and your partner well. I used this form a LOT during my illness for support and advice even though all my health care professionals were excellent. My problem was, I couldn't even speak for several months so this forum was essential to me. My health care providers hadn't gone through cancer and treatment themselves but people on this forum had, and could speak from their personal experience. Anyway, eat whatever you love for now and please accept my best wishes for your treatment and recovery!

  • Wishing you & your partner a lovely indulgent festive season and all the very best getting through treatment. My diagnosis was very similar and three years on I'm 100% well and enjoying life. Just hang in there! Good luck

    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 3 years all clear. See my profile for longer story

  • Thank you so much for your reply. I’m glad you haven’t needed the forum for a while! Andy will have an NG feeding tube so that’s good it’s already been discussed. He wants to get on with it now, we’re waiting for the mask appointment. Everything still feels surreal at the moment but with such a good prognosis, that’s what we’ll focus on. Hope you have a lovely Christmas.

  • Thank you for your message! Lovely to hear that things are good with you. Sooner we get started, the sooner it will be done. Luckily we live close to the hospital so that’s a positive. My employer has also been very supportive too saying that I can take whatever time I need to care for Andy during treatment. Have a great Christmas Christmas tree