To tell or not to tell

hfeff
hfeff Member Posts: 2
edited March 2014 in Brain Cancer #1
My aunt was diagnosed with lymphoma of the brain. THey removed as much of the tumor as they could. She is still recovering from the surgery. She was on the brain injury ward, then to the acute rehab ward and now off to the oncology ward. My question is this. All she knows is that she has brain cancer and that she needs to go for radiation and chemo treatments. (She has already survived cancer twice through radiation.) She was okay with the news and was optomistic but she doesn't know the extent of the prognosis. My mother and my cousin have kept her in the loop with everything except life expectancy. What is the right thing to do? Have her go through the treatment with the hopes of extending her life as much as possible? Maybe there will be a new drug or treatment that will come out in the next year. Or do we tell her and let her decide whether or not she even wants the treatment? Obviously she has a right to know but will this news discourage her and make her lose her will to live?

Comments

  • jagged
    jagged Member Posts: 55
    #2
    to tell
    My question is, Where are the Doctors in this? It is their job to discuss treatment and life and death with their patients. If they have, maybe your aunt is in denial, maybe she does not know how to discuss the subject with others, or maybe she is not able to deal with this conversation because of the drugs. Either way, request a family conference to discuss treatment, life expectency, and death. This way, the cards are on the table and discussion becomes easier.

    Pick your timing a bit here, but I recommend the more upfront the better. She may be relieved to discuss this, maybe not. If she appears very depressed, maybe consult the Doctor first. You will know more if you at least approach the issues. There are details around death she may need to know and deal with; like when is it ok to stop treatment, how is pain handled, where does Hospice fit in, funeral arrangements, notifications, and the will. Approach the subjects and see what happens.

    My cancer is stage 4. By far, the best thing for me has been to openly discuss dieing with my husband and family. I find it is often tougher for others to discuss then it is for me. People seem to dance around emotions. Sad, denial, inheritence, how honest should I be?, Is that a tacky question?, etc. Consider grief counseling for anyone involved.

    I send my best wishes to you, your aunt, and her family.

    --jag
  • hfeff
    hfeff Member Posts: 2
    #3
    jagged said:

    to tell
    My question is, Where are the Doctors in this? It is their job to discuss treatment and life and death with their patients. If they have, maybe your aunt is in denial, maybe she does not know how to discuss the subject with others, or maybe she is not able to deal with this conversation because of the drugs. Either way, request a family conference to discuss treatment, life expectency, and death. This way, the cards are on the table and discussion becomes easier.

    Pick your timing a bit here, but I recommend the more upfront the better. She may be relieved to discuss this, maybe not. If she appears very depressed, maybe consult the Doctor first. You will know more if you at least approach the issues. There are details around death she may need to know and deal with; like when is it ok to stop treatment, how is pain handled, where does Hospice fit in, funeral arrangements, notifications, and the will. Approach the subjects and see what happens.

    My cancer is stage 4. By far, the best thing for me has been to openly discuss dieing with my husband and family. I find it is often tougher for others to discuss then it is for me. People seem to dance around emotions. Sad, denial, inheritence, how honest should I be?, Is that a tacky question?, etc. Consider grief counseling for anyone involved.

    I send my best wishes to you, your aunt, and her family.

    --jag

    Thank you for your response.
    Thank you for your response. The doctors have already discussed treatment so she knows about the chemotherapy and the possible radiation. She knows the doctors do not want her to be alone when she is released. They have not discussed life and death with her, partly because my mother doesn't want them to and partly because the doctor said he tries to keep it positive and just say "You'll be around for awhile". It's also my mother and my cousin (her daughter). They don't want to tell her. But I really feel like they aren't being honest with her and that she should really know. But I am not in the position to tell her. I'll talk to my mother and see. Thanks for your help.
  • jagged
    jagged Member Posts: 55
    #4
    hfeff said:

    Thank you for your response.
    Thank you for your response. The doctors have already discussed treatment so she knows about the chemotherapy and the possible radiation. She knows the doctors do not want her to be alone when she is released. They have not discussed life and death with her, partly because my mother doesn't want them to and partly because the doctor said he tries to keep it positive and just say "You'll be around for awhile". It's also my mother and my cousin (her daughter). They don't want to tell her. But I really feel like they aren't being honest with her and that she should really know. But I am not in the position to tell her. I'll talk to my mother and see. Thanks for your help.

    Every oncologist I have dealt with talks to their patients about their situation, and talks with the family if they are with the patient (this is only my experience and I have heard others). My guess is that your Aunt, at some level, knows what is going on and is not able to discuss things. Denial is a powerful thing and for some people, it is very necessary. Good luck.

    --jag
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #5
    jagged said:

    Every oncologist I have dealt with talks to their patients about their situation, and talks with the family if they are with the patient (this is only my experience and I have heard others). My guess is that your Aunt, at some level, knows what is going on and is not able to discuss things. Denial is a powerful thing and for some people, it is very necessary. Good luck.

    --jag

    Oncologists
    This may give you some consolation about how your oncologists feels about giving percentages about survival rates and such. ......I ask my oncologist " If you take the money you make completely out of the equation, how can you do this type of work and have any feeling of accomplishment with as many people that fail to respond to treatment." He simply put it this way..." If I can walk the patient and the family down the right paths through this dreaded disease and make them as comfortable as I can and the path as easy as possible for them then I can say that I have succeeded, and I take that as my reward for the service I give".....That summed it all up for me...People all over the world are given percentages and times and you are not guaranteed a second, nor can they tell you when you time is up. There are to many miracles and new treatments and just phenomenons that happen everyday to give a specific time.....My outlook is never put anything on hold, and always plan on future outings, trips etc as you did before. Attitude is 10% what happens to you and 90% on how you react to it. Keep a smile around everyone and they will think one of two things , either you are up to something or everything is great, or both......

    God Bless ya....you know he will.......
  • Mannie
    Mannie Member Posts: 52
    #6
    To Tell or Not to Tell...
    I was diagnosed with a rare type of brain tumor March '07. I did not want to know about life expectancy and all that other kind of stuff. I knew from taking family cues that it was a bad situation. I also didn't have the time or energy to care at that point either. What I did was take the advice of my doctors and not worry about the rest. It's up to God who goes and who stays anyhow. But interestingly I was going through my medical records a couple days ago and found a letter my oncologist wrote to someone about my prognosis and became physically ill after reading it because I never heard my doc talk negatively about prognosis and what I read was shocking. Based on the pathology report, I have a genetic mutation on my 10th chromosome that makes it difficult for my body to fight off high grade cancers. That's not what I had wanted to hear, even almost 2 years after diagnosis. I am glad I did not know. It would not have changed my decision to have surgery, radiation, and chemo in any way but it would have just been unnecessary information floating around a brain that had a tremendous amount of damage done to it. I personally don't think it's your call whether she finds out or not, if she wants to know, she'll ask or find out on her own.

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