Windpipe cancer

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I just feel sometimes that the doctor /specialist have written my husband off it’s very frustrating not knowing how long or wat stage everyone looks at me so pitiful 

  • Hi Susyq

    I am so sorry to hear about your husbands diagnosis .Its really tough for the patient and those closest to them.

    We all need a supportive contact person at the hospital normally your CNS Cancer Nurse Specialist .You can always ask any questions you have to them or the Oncologist /ENT if you are wanting to find out more information( stage of cancer / wether it is curable or not/ treatment plan etc).

    I phoned the hospital and spoke to my Oncologists secretary who asked him all of my questions and then called me back with the answers.

    You can also ask if there are any clinical trials that your husband is eligible for .

    I hope you can get some answers to the questions you have.

    Big hugs

    Debbie 

  • Hi again Susy

    Debbie is right. You do need some answers so do call your husbands CNS. There may well be no cure his oncologist can offer but you need to know if your husband has now been referred back to his GP. It’s the GP practice that will be in charge of care going forward and thus needs to be sorted out quickly. 
    I hope you get speedy answers. 

    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 have spoke to everyone who is involved they say they don’t know saying it’s rare 

  • Yes iv been to gp he refers to the letters that we both have from hospital telling us where it’s at which is windpipe also in the cartilage but he can’t do anything 

  • Ok. I see. Then you shouldn’t just have a letter but an appointment with the oncologist to sit you down and explain. Take pen and paper or record on your phone and don’t leave till you understand. 
    Do you have an appointment scheduled? 
    if not phone the CNS and insist on one. 
    I do find it strange that no clinician if any kind is discussing how to proceed. 
    Get his G P to intervene on your behalf. 
    There is no way you can simply be dismissed to fend for yourselves. 
    Try a complaint via PALS too 

    Finally. Do ring the MacMillan support line. You can get some advice there too. 

    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 Susy

    Dani is right you definitely need an appointment with the Oncologist asap,

    Give hospital a call tell them your husbands details and ask to go through to his Oncologist. At appointment write down all the questions you have and space for the answers (even better is to ask a friend or family member to go with you both).

    This is very unusual but certainly not helpful for you both x

    Debbie

  • PS if you’re not at a specialist cancer centre asking for a second opinion from one might be an idea too 

    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
  • Thankyou for your help

  • There was a meeting at the hospital with the consultant oncologist and other specialists but all decided if there was any intervention it would make my husbands time he has left  not good for him like they couldn’t put a stent in or any operation because that would effect his quality of life