Husband just diagnosed with upper tracheal cancer, what questions should I ask?

  • 30 replies
  • 88 subscribers
  • 2127 views

I'm talking to ENT specialist tomorrow, what questions should I be asking?

Husbands 77, been losing voice for about 3 years but wouldn't get help just got biopsy results today that it's malignant. 

Just need to know what I should be asking specialist. Appreciate any input right now x

  • Hi Jasper welcome but sorry you have to join us. 
    I think the mist important thing to start with is to find out what the treatment will be and whether it’s aimed to cure or prolong life. Sorry to be so blunt but that’s the reality 

    What if any are the alternatives 

    Then you need to know  what the likely short and long term effects will be and who will support you both at this time. 
    Macmillan has info on this 

    I’ll find it for you 

    Dani 

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

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

    Community Champion badge

  • I’ve found it here https://www.macmillan.org.uk/cancer-information-and-support/head-and-neck-cancer/preparing-for-head-and-neck-cancer-treatment

    Take a notebook or even record the consultation on your phone. 
    Don’t be afraid to make sure you understand everything that’s said. You won’t be wasting anybody’s time.
    Sometimes the consultant might pass you on to your husbands Clinical Nurse Specialist to clarify points. 

    Dani 

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

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

    Community Champion badge

  • Thanks beesuit, I've no illusions how this will turn out and being blunt is what I want right now. Thank you for your reply Pray

  • Yeah I was thinking of putting it on my phone, you tend to blank out when they're talking to you. I'm scared about him coming home and having to look after him. He has a trach atm and I'm supposed to be learning how to deal with it tomorrow

  • It’s not easy. My first husband had a laryngectomy and I had to learn how to look after it but he was stubborn in his refusal to be labelled a cripple and was adamant he would live the best life he could so it wasn’t that difficult in the end. 
    I just feel so sorry for you both. Try not to get bogged down in “What ifs” and try your best. It’s all you can do? 
    How is he coping mentally? 
    Macmillan offer specialist counselling if that might help

    https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

    Don’t be reticent about phoning the helpline either. 
    The number is at the bottom of this post. 
    There is also the Swallows Head and Neck Cancer charity. They have a 24/7 helpline manned by a human being. No machines. 
    https://theswallows.org.uk/

    There’s lots if help here whether you want advice or just need to stamp your foot and rage. There’s usually somebody to join you fairly quickly. 
    Hugs 

    Dani 

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

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

    Community Champion badge

  • Thanks Dani, I'm not sure if they can operate on it, might be too far gone, I'll find out tomorrow I guess. Mines a bit more like wants me to deal with it all Disappointed do you get support from district nurses do you know? I think there's a bit of denial atm but I'm going to ask the specialist how he reacted when she told him. I've got a minor op myself on Monday Confoundedand he's on about coming out on Tues Confounded I don't know if I can cope with myself and him at first, mines not major but it's a general anaesthetic and I need a couple of days to recover. I feel guilty having it tbh. X

  • Hi Dani has covered a lot. I’ll add please look after yourself. You need to be well to help him , explain to his dr that you need a few days to recover from your op, before he comes home  

    hugs Hazel  

    Hazel aka RadioactiveRaz 35 radiotherapy and 2 chemo  3 rd cancelled. HPV tonsil cancer 7 lymph nodes. 8 years post treatment living a great life. 
    No questions too daft to ask. 

    I’m also an ambassador for https://oraclehnc.org.uk/
    A leading head and neck cancer charity. 

    This is a link to a webinar i did with Oracle explaining the process of diagnosis. 

  • Thanks Hazel, I think I'll have to x

  • do you get support from district nurses do you know?

    Yes, you should. 

    Something should be put in place if needed

    Good luck for today

    Dani 

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

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

    Community Champion badge

  • Hi Jasper I can't really add anything else to the answers you have already had. I would just say, you will be able to cope with things, and I'm sure you will do your best, that's all you can do. Stay with us, we're all here to help with any worries or questions you have. 

    Ray