I want to find out more about husbands prognosis but he doesn't want to know.

My husband had a full nephrectomy in January this year. Diagnosed with renal cell carcinoma stage 4 metastasis in April. He had immunotherapy which didn't work and has since been taking cabozantinib tablets 60mg.

Cancer metastasis to brain, which he had radiotherapy on, still waiting for follow up mri in November. Metastasis also to lymph nodes, liver and other kidney.  He is going to be having radiotherapy on main tumour at site where kidney was removed. This is because tumour is pressing on nerves in spine and the hope is they may be able to shrink tumour to relieve some of the pain.  He is in acute pain all the time, therefore taking lots of medication.

The local hospice are involved in the pain management and they have agreed that maybe a short stay with them, may help.

I have noticed the weight loss, sickness, fatigue, loss of appetite and not drinking much. My husband is in denial and does not want to know his prognosis.  I on the other hand, feel completely different. I feel the need to know,  so I can deal with all the problems that cancer throws at us.  I go to all my husband appointments and am very much part of all discussions.   How can I find out exactly what's happening to my husband, so that I know what I am dealing with, without causing upset to my husband.  We have a meeting with consultant next week, how can I ask my husband to wait outside for me whilst I discuss his end! This is all so difficult, pretending that everything is going to be OK. It's taking its toll and I am starting to feel depressed.  Could anyone please advise me?

  • Hi Best

    First a big hug! Everyone here knows our partners suffer as much as we do while going through cancer.

    It is a shame nobody has replied to your difficult to answer post.

    I understand why your husband does not want to know any more information about his cancer, it is a coping mechanism many of us use, including myself. He already knows his prognosis and being presented with more information will make little difference. You mention that your local hospice has offered a short stay, take them up on the offer, he will get good care and pain management and both of you will get some respite. I don't think you should put the consultant in the difficult position of being asked to discuss your husbands outlook without him being present, unless he has given his permission for you to do so. Patient confidentiality and all that, even for husbands and wives, yes I know it is daft. Please accept more big hugs as I can appreciate you are at your wits end.

    Ed

  • Hi I really feel for you as I also wanted to know for the very same reason you do, to help deal with the situation. My husband did not want to know initially but did change his mind in the end . He also refused any more scans as his treatment had to be stopped as he felt there was no point in scans as they weren't going to treat anything else that showed up. I wanted him to have another scan as he became more unwell as we had to assume it was the cancer spreading but didn't really know where it was spreading to! 

    I found the whole 'not knowing' situation very difficult and frustrating. I hope you can get the answers you need to help you feel and cope better x

  • Hi Ed, thank you for your reply. My husband has told me I can ask any questions,  just not ask about the prognosis!  I will respect his wishes. Big hug back too you and best wishes.

  • Offline in reply to DianeE

    Diane Thank-you for your reply, just have to respect husbands wishes. Very frustrating indeed, cancer is in my every thought of every day. Best wishes x

  • Offline in reply to Best1

    Wishing you and your husband all the very best. Take care xx