2weeks till start treatment

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That's us now 2 weeks till start treatment for my husbands scc of tongue hpv positive with 2 lymph nodes involved. 6 weeks radio and chemo starts on 7th July. An abundance of appointments before that with peg being fitted on 4th of July. My husband is diabetic and is worried how all treatment etc is going to affect that. Also we are at a point where every thing feels its cancer  related. He is terrified the cancer will have spread as scans were only done head neck and chest. I m sure this overthrowing is part and parcel of this journey but does it get better. I can't imagine going through life worrying every single niggle is a sign the cancer is spreading . Did anyone else feel this way? We have been so fortunate in that our team has really pulled together and since first appoint on 13 th may everything has been coordinated so well and as I said treatment starts 8th July. Could just do with wee injection of positivity from members of forum. 

  • Let me help reassure. This cancer is very radiosensitive and cure rates are in excess of 90%
    If it spreads anywhere it’s to the lungs which is why only head and chest are scanned. Even then metastasis outside the neck is rare. So hold onto that. 
    I’m over five years clear with very few side effects living well 


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

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


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

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  • When I was diagnosed in July 2022 and was eventually given the plan for my treatment, I could not wait for the treatment to start and it made me feel that I was then actually doing something to evict the unwanted lodger. Once diagnosed we all worry about it spreading or coming back. A feeling that never leaves us but we learn to deal with in order for it not to take over our lives.  It is hard to say "don't' worry" as it is easier said than done. I have learnt though to focus about what I can control or/and what I can do to help my body (and mind) cope with the treatment and the side effects . Your husband is in good hands and even though yes the treatment can be quite daunting and tough, there is light at the end of the tunnel. When you are going through the treatment, you feel that you are caught up in a whirlwind, your treatment and your appointments take over your life, but this is temporary and eventually you will feel that you are in control again. Your husband needs to take each day at a time and look after his body and mind. He needs to listen to his body and rest plenty whilst carrying on doing activities he enjoys doing.  Make sure that you do this too as I know that it is so hard to see your partner go through this. You feel powerless. My partner never told me how he felt during my treatment as he wanted to be strong for me, however he told me (just a few months ago) that he had been so scared of losing me and was so upset to see me so unwell. This space is for your husband and for you too to ask any questions but also to turn to if you need to talk and express how you feel. We are all here for you both. Things will get better, see the treatment as the beginning of the end of the cancer. 

    Sending you loads of positive vibes and hugs. 


  • Thank you. This is what we really need to hear and from people like you that have been here x

  • Thank you. People replying and being so positive helps more than uou can imagine x

  • Hi Brisbane

    Finished Chemoradio treatment in June 2023

    Only natural to start associating every twinge and bump with cancer....unfortunately the treatment will bring unpleasant side effects for most....par for the course....PEG tube care is really important ....infections can appear at the site.

    But things will improve....I've been on sunshine breaks with my wife....eat out regularly.... go swimming...have the occasional round of golf...we just have to deal with any problems as and when they appear.

    Take care and best of luck


  • You will both feel better about it all once his treatment gets underway. He will be in the best of hands, by those who do this every day, and get great results from the treatment. Look at it as the road back to health. Keep his team informed with any worries you may have, and you can always ask any questions on here.


  • Thank you really value all comments from forum. Sure will pop in here a lot in coming months. Good to speak to people who understand 

  • Thank you Peter. All info we receive on forum is very welcome. So reassuring there are so many people out there who care enough to help others starting out on this journey 

  • Hi Brisbane

    Your husbands feelings are valid about the cancer spreading - I was convinced that I was riddled but after CT, MRI and PET scan I was clear apart from the primary that was on my right tonsil. Fortunately my lymph nodes did some mopping up and contained the cancer. As Dani and others have said the cure rates are very high for this type of cancer. 

    I have just finished radiotherapy and it has been hard but the staff and NHS have been brilliant.

    Best wishes to your husband xx

  • Hi take  notice  ftom what Dani’s said our cancers respond extremely well. After treatment please don’t waste time dwelling in the maybes or what ifs. Lives for living. I live a fantastic life cancer didn’t stop me living. I flew to Spain 8 weeks after treatment finished hubbys 60 th. We spend 20 weeks a years spread through the year there we’ve an allotment  look after our grandson well he looks after us now he’s 13. Please please don’t dwell . It’s extreme rare ti get spread. So hunker down for treatment it’s hard but I was 61 and I did it. Blog below might help. 

    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