• How much information to share

    Asked by aedwards on Wednesday, May 27, 2015

    How much information to share

    My husband has no idea how poor his prognosis is. He hasn't looked up anything on the internet and his oncologist is very positive. If he knew, he could not mentally handle it. He has plans to go to Vegas when he gets into remission. Is it wrong to keep information from him? I am praying that he will not know the prognosis for Stage IV Cholangeocarcinoma/Adenocarcinoma/Bile Duct Cancer until he is on so many meds that he can handle hearing it. Is this the wrong thing to do? We are hoping that since he is so young and only has 3 small metastisis, that we can get a lot of time, with the right chemo. I don't know the best way to handle this.

    12 Answers from the Community

    12 answers
    • CASSIEME1's Avatar
      CASSIEME1

      NO, PLEASE EXPAIN TO HIS OR HAVE SOMEONE ELSE TO DO SO.IN MARRIAGE OR RELATIONSHIP YOU SHOULDN'T HIDE ANYTHING. TIME/ LIFE IS TOO PRECIOUS TO LIVE IN PRETENSE. LOVE ALWAYS FINDS A WAY TO COPE. WITH GOD NOTHING IS IMPOSSIBLE. AT THE WEST CLINIC I SEE A LOT OF PATIENTS WITH STAGE 4 THATS FIGHTING AND MAKING IT WHE THE DOCTOARS SAY THE PROGNOSIS IS BAD. LOVE HIM THROUGH THIS. SURVIVOR HUGS N KISSES@@@@@@

      over 4 years ago
    • aedwards' Avatar
      aedwards

      Oh I love him through this, with everything that I have and am! I just really think he would give up if he knew. For the days that he has left, I want him to have hope, a lot of hope! I don't want him to spend his days in severe depression. Ahhh, this is so agonizing.

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      I have a feeling HE knows MORE than YOU think. AND if he doesn't maybe he's better off NOT Knowing.....

      over 4 years ago
    • geekling's Avatar
      geekling

      I won't comment on what you are doing because I am not involved but if you keep to this course perhaps it is best that you join him in planning for the Vegas trip or even suggesting taking it early.

      Ohio can be a very backwater part of the world. There are always other options.

      over 4 years ago
    • Jalemans' Avatar
      Jalemans

      Everybody is different. For me, I want to know it all & I have researched stuff to death, but for others, they don't wish to know the odds. People beat the odds all the time. I've learned that here.

      Anyway, if he isn't asking then it is my opinion that you aren't withholding anything from him. Of course, if he asks you should be honest, but he may not want to hear the doom & gloom. I agree with Barry that he most likely understands the seriousness of his cancer, he is just choosing to think positively. Good for him!

      I do agree that you shouldn't "hide" things from him, but you aren't hiding something if he isn't wanting to know. My husband has a difficult time working through my health issues & I can be rather blunt so have learned to dispense information in smaller, gentler doses. I am not being dishonest, I am just adjusting the information so he can digest it.

      I hope you guys make it to Vegas! It does help people to have things to look forward to.

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I wanted to know everything. It is I who keeps things from the family. I would personally be livid if i was not told everything. I agree, too, that he probably is more aware than you know of his status.

      I also agree that if he wants to go to Vegas, go to Vegas.

      AND, stage IV isn't an automatic death sentence. I hope he will live for many more years.

      over 4 years ago
    • Traceypap's Avatar
      Traceypap

      Power of the mind is huge. He probably knows more than you think as he is the one feeling all the changes in his body. You could encourage him to feel confident to ask his doctor or oncologist anything he is worried about or wants to know and just be there with and for him when he gets the answers. I keep the doctor Google stuff to myself and tell my partner what the oncologist says. I'm the the one with the cancer though and I want to know everything.

      over 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      The internet is a scary place to get info. Remember -- those stats are at least 5 years out of date. When I was diagnosed w/stage IV b endometrial cancer, those stats said 5% chance for 5 years. I'm more than half way to that magic 5 years w/NED (no evidence of disease). If his oncologist is optomistic, it may be he has a "weird cancer". All my mets went to my omentum (layer of fat over the abdominal organs), which was removed when I had my hysterectomy. So I'm stage IV, but a weird stage IV.

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      You say his oncologist is very upbeat. Believe me that is a great blessing. In that case, I believe you should discuss with his oncologist how much information to tell him and how. There are many ways of getting the facts out there. What you find on the internet has many degrees of reliability And guess what a prognosis is not a fact, it is an educated guess based on statistics that are five years old.
      If you are going to do any research you must do it much deeper than just typing in bile duct cancer into Google. If there is an university close by I suggest that you get in touch with them to see how much access they grant to the community. Also your local library might have access to better information. In doing research forget doing gloomy prognosis research. Research instead advances in the field, like clinical trials.
      Also right now is the time to start a healthy lifestyle.
      An upbeat onc is the best asset a cancer patient can have and in your case I believe the best person to give the details to your husband. .

      over 4 years ago
    • cam32505's Avatar
      cam32505

      Your husband has a right as a patient and an adult to know about his illness. There may be things he wants to do or say before it's too late. I know you want him to have hope and there's always new and better treatments in the pipeline. I wish you well.

      over 4 years ago
    • amontoya's Avatar
      amontoya

      I was in your situation when I was the caregiver to my ex. He wanted to know nothing and wanted me to handle everything and have all the knowledge. For some reason, he could not wrap his mind around the facts and just didn't understand what was happening to him. I thought it was selfish and immature to burden me with everything while he ignored the facts. Eventually the burden was too much to handle by myself and we parted ways. He is still a train wreck but cured. Shielding him from the truth did NOTHING for him but make him a much more difficult person to deal with. This is your choice but I cannot understand why you would want to shoulder the burden alone?

      over 4 years ago
    • HeidiJo's Avatar
      HeidiJo

      You know him best and what is right for him. He may be in denial, and is dealing with it the best way he knows how. He probably does know more than you think. If planning a trip to Vegas helps him cope, so be it. It can help him deal with this whether he actually gets to go or not. Miracles happen every day. I was in denial when I was first diagnosed, I went around telling everyone I had Lymphoma with a big smile on my face like I was telling them I had a bee sting! Its funny when I look back on it now.

      over 4 years ago

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