My luck has finally run out

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Sorry to share bad news on what is such a helpful and positive forum, but, after 4 successful lots of cancer treatment in the last 10 years, it seems that the fifth is likely to be my last. I’ve been told by my wonderful ENT surgeon that my latest tumour is on the base of my tongue, close to my larynx, so the surgery would be radical and life changing. I’ve been through so much in the last 10 years - neck dissection, chemo-radiotherapy, lung resection, surgery on my tongue and then on my throat - that I really can’t face any more. They admitted that it might not even get rid of the cancer anyway. So, the choices put before me were: do nothing and maybe live for six months; further tests to see if I’m ok to have immunotherapy; have chemo. After some discussion we decided to try the immunotherapy route and, good news, I’m suitable. It won’t cure me but may give me more time, possibly up to two years. I have to admit that over the past 10 years, in the darkest times, I’ve had those conversations in my head about dying, but then it was just a theory, now it’s actually going to happen. I can’t believe it’s real, that this is what it’s come to, and I have to come to terms with it. It’s not even like I’m old, I’m 67, still so much living to do! I’ve got a great medical team, lovely family but they’re also suffering, and I start immunotherapy on Tuesday. Hoping that I respond well and have minimal side effects. 

  • Oh I am so sorry.  It's a conversation that we all have had and I still do but it's heartbreaking to read it's for real. There have been great responses to immunotherapy so hold onto that. I have a contact who has been on Nivolumab for five years and you read about others who live much longer. Please keep in touch if you feel you can. Fingers crossed that you do well on it.Hugs

    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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  • I'm so sorry, after all you've been through, and still young. It's good to share the bad news on here too, we shouldn't pretend it doesn't happen. Wishing you well and I hope immunotherapy works for you. Let us know how you get on? 

    Catriona

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Dec 2023 one year all clear. See my profile for longer story

  • I am soooo sorry to hear about your news. You have gone through so much. Hopefully immunotherapy will work very well as he does for a lot of people. Don't give up. We all here for you. 

    Sending you and your family loads of love and positive energy. 

    Good luck for Tuesday. 

    Fab1

  • So sorry to read your news, you have been through so much, and now you have had this choice to make. I hope the immunotherapy, will give you the time to have with you family. 

    Kindest Regards Ray.

  • I guess we all have the theoretical conversation, but for real...  You have to make the right decisions for you and I hope everyone respects that, no matter how difficult it is to accept you decision.

    I have seen friends on immunotherapy (for different cancers) get more than a decade of good quality life so here is hoping that whatever  immunotherapy gives you it gives a good quality of life for you and your family.  Thinking of you.

    Peter
    See my profile for more details of my convoluted journey
  • I’m so sorry to read this. I have read that immunotherapy does have some good results, will pray that you do well on it. Sending my very best wishes to you and your family 

  • Oh my heart hurt when I read this - sending you lots of love and strength and I’m willing that immunotherapy to work for you xx

  • Hi oh dear I’m sad to hear this , yes we all have the conversation in our head but hope never to action it. Immunotherapy is having good results for many .ive a friend whose cancer had metastases to lungs and his last scan was clear , like he says he knows he can’t get cure but a few more years is what he would like. We’re all here for yiu to cry or rant or advise. 

    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Thank you all for your replies and encouraging messages, and for understanding that I felt I needed to share my bad news. Only time will tell, but I’m going to give it my best shot and try to stay as positive as I can. I’ll let you know how it goes.  Best wishes to you all as well on your own personal journies Hugging 

  • So sorry to read your news. I hope the immunotherapy is successful and gives you all the time that you want with your loved ones x Tina