husband with advanced prostate cancer refuses treatment after doctors told him his sentence

2»

Comments

  • 2ndBase
    2ndBase Member Posts: 220
    #22
    Treatment Choice
    I know about how the drugs for pain and the pain itself can cause very strange behavior. I have had pains that make a level 10 something to wish for that lasted over 90 minutes. It can be horrible. Always try to stay ahead of the pain regardless of whether you think you need the meds or not. Hospice will also provide radiation on tumors to relieve pain and in my case that has done more good than the medicine. But the meds must be taken if pain is an issue. It is important to keep exercising and eating well. By having prepared for this day for the past 8 years I have enabled myself to still be able to work a job and garden and play golf. I can barely walk and use a wheelchair some but I will never give up trying to improve my quality of life. Your husband has to do it for himself, no one else can or will. If he does nothing or everything available his life expectancy is unknown. I was given a 50% chance to make it two years. It has now been eight. Hospice will be there if he chooses and I am able to do all I can because I have it. Pay no attention to what doctors say about time left. They have no idea and neither does anyone else.
  • lindachampagne60
    lindachampagne60 Member Posts: 16
    #23
    2ndBase said:

    Treatment Choice
    I know about how the drugs for pain and the pain itself can cause very strange behavior. I have had pains that make a level 10 something to wish for that lasted over 90 minutes. It can be horrible. Always try to stay ahead of the pain regardless of whether you think you need the meds or not. Hospice will also provide radiation on tumors to relieve pain and in my case that has done more good than the medicine. But the meds must be taken if pain is an issue. It is important to keep exercising and eating well. By having prepared for this day for the past 8 years I have enabled myself to still be able to work a job and garden and play golf. I can barely walk and use a wheelchair some but I will never give up trying to improve my quality of life. Your husband has to do it for himself, no one else can or will. If he does nothing or everything available his life expectancy is unknown. I was given a 50% chance to make it two years. It has now been eight. Hospice will be there if he chooses and I am able to do all I can because I have it. Pay no attention to what doctors say about time left. They have no idea and neither does anyone else.

    Treatment choice
    Thankyou for your post. You are right. how can doctors tell how long you have without a biopsy?
  • lindachampagne60
    lindachampagne60 Member Posts: 16
    #24
    2ndBase said:

    Treatment Choice
    I know about how the drugs for pain and the pain itself can cause very strange behavior. I have had pains that make a level 10 something to wish for that lasted over 90 minutes. It can be horrible. Always try to stay ahead of the pain regardless of whether you think you need the meds or not. Hospice will also provide radiation on tumors to relieve pain and in my case that has done more good than the medicine. But the meds must be taken if pain is an issue. It is important to keep exercising and eating well. By having prepared for this day for the past 8 years I have enabled myself to still be able to work a job and garden and play golf. I can barely walk and use a wheelchair some but I will never give up trying to improve my quality of life. Your husband has to do it for himself, no one else can or will. If he does nothing or everything available his life expectancy is unknown. I was given a 50% chance to make it two years. It has now been eight. Hospice will be there if he chooses and I am able to do all I can because I have it. Pay no attention to what doctors say about time left. They have no idea and neither does anyone else.

    Treatment choice
    Thankyou for your post. You are right. how can doctors tell how long you have without a biopsy?
  • gator880
    gator880 Member Posts: 21
    #25
    lindachampagne60 said:

    Treatment choice
    Thankyou for your post. You are right. how can doctors tell how long you have without a biopsy?

    Treatment choice
    Linda,
    My thoughts and prayers are with you and your husband. My husband was told 2 years ago (2 years after original diagnosis and treatment) by his oncologist that he had 1 year to live. Wrong--he's still here! Also have a favorite name for that "all-knowing" doctor! After being told that, my husband made some serious financial and life decisions that were only because of that 1 year lifespan prediction...
    Few facts: he was Gleason 9 after his rp surgery, at age 61, and the cancer had spread locally at that time. 2 years ago it was found in his lungs, and 1 year ago in his bones. He's had radiation and hormone treatments and while he's not great, his quality of life is better than we had thought it would be. No one knows that "how long do I have" answer and what a disservice to make those God-like predictions. I hope your husband will find some medical people he trusts and talk with them to determine what might be done to help him and your whole family. It's a scary time, and cancer and the pain and fear can make rational decisions difficult.
  • davidp46
    davidp46 Member Posts: 11
    #26
    death sentence
    I am very sad. He may be right to acquiesce, but if he chooses to fight in any reasonable (or unreasonable) way he can, he may help find answers for others (i.e. the "rest of us") and like chicken soup, his fight against the demon will do no harm and possibly much good. I wish (and will) him well in all things.
    DavidP.
  • lindachampagne60
    lindachampagne60 Member Posts: 16
    #27
    lewvino said:

    Linda,
    Please do keep us
    Linda,
    Please do keep us updated on you and your husbands progress. We are truly a group of caring people on this forum. I'm truly sorry to read about your first husbands death to cancer also.

    Also know that their is a private email feature on this forum (CSN Email) where you can talk off line to members if you want. I'm sure any of us would be glad to listen to you if you need that. As you know we have male and female members on the forum.

    I believe many of us have the same goal on being here, Helping others, learning and sharing our experiences with others.

    I'll keep you and your husband in my thoughts and prayers.

    lewvino (Larry)

    Thankyou to all who have posted.
    now for the waiting game. If anyone knows of anyone who passed away from prostate cancer, will you please give me all symptoms to the end??? PLEASE! No matter how tough it is, i have to know when its time to admit him to the Va, if he cant walk, or how long will I alone have to take care of him or get hospice. I just need to know. nobdy wants to give those answers, but i need to know what to look for, and when to call the doctor for more pain meds or whatever i need to do. im really thinking he is getting bad, but wont talk about it. He limps, he has a hard time gettimg up from a sitting position, and has to sleep with a hptwater bottle. THANKYOU PLEASE, Dont soft soap it. i need to know
  • lindachampagne60
    lindachampagne60 Member Posts: 16
    #28
    lewvino said:

    Linda,
    Please do keep us
    Linda,
    Please do keep us updated on you and your husbands progress. We are truly a group of caring people on this forum. I'm truly sorry to read about your first husbands death to cancer also.

    Also know that their is a private email feature on this forum (CSN Email) where you can talk off line to members if you want. I'm sure any of us would be glad to listen to you if you need that. As you know we have male and female members on the forum.

    I believe many of us have the same goal on being here, Helping others, learning and sharing our experiences with others.

    I'll keep you and your husband in my thoughts and prayers.

    lewvino (Larry)

    Thankyou to all who have posted.
    now for the waiting game. If anyone knows of anyone who passed away from prostate cancer, will you please give me all symptoms to the end??? PLEASE! No matter how tough it is, i have to know when its time to admit him to the Va, if he cant walk, or how long will I alone have to take care of him or get hospice. I just need to know. nobdy wants to give those answers, but i need to know what to look for, and when to call the doctor for more pain meds or whatever i need to do. im really thinking he is getting bad, but wont talk about it. He limps, he has a hard time gettimg up from a sitting position, and has to sleep with a hptwater bottle. THANKYOU PLEASE, Dont soft soap it. i need to know
  • lindachampagne60
    lindachampagne60 Member Posts: 16
    #29
    lewvino said:

    Linda,
    So sorry to read
    Linda,
    So sorry to read about your husband. One thing you did not mention is his age. Would you mind sharing? Also you mentioned two years ago his PSA was 34. Was no treatment done at that time?
    It also sounds like your husband has not had a prostate biopsy if I'm reading your post correctly.

    As others have suggested I would encourage your husband to seek a second opinion.

    Best wishes and please keep us updated.

    lewvino

    prostate cancer
    Hi Lewvino. My husband is now walking in hos sleep, doesnt know where he is, doesnt understand me, pees on the floor anywhere. i dont know if its a seizure or his meds. anything you can tell me would be greatly apreciated
  • lindachampagne60
    lindachampagne60 Member Posts: 16
    #30
    davidp46 said:

    death sentence
    I am very sad. He may be right to acquiesce, but if he chooses to fight in any reasonable (or unreasonable) way he can, he may help find answers for others (i.e. the "rest of us") and like chicken soup, his fight against the demon will do no harm and possibly much good. I wish (and will) him well in all things.
    DavidP.

    prostate cancer
    Thankyou David. He is now sleep walking anmd peeing on the hall floor, doesnt know where he is or what hes doing. Im scared for me as well as for him
  • nowrest
    nowrest Member Posts: 48 Member
    #31
    lindachampagne60 said:

    prostate cancer
    Thankyou David. He is now sleep walking anmd peeing on the hall floor, doesnt know where he is or what hes doing. Im scared for me as well as for him

    a real weight
    You certainly are shouldering a tremendous load. I don't know if hospice is an option at this point.
  • mrspjd
    mrspjd Member Posts: 694 Member
    #32
    nowrest said:

    a real weight
    You certainly are shouldering a tremendous load. I don't know if hospice is an option at this point.

    Hospice is ALWAYS an
    Hospice is ALWAYS an option...a compassionate option. But in order for it to be an option, some one, a loved one, a caregiver, linda, a close family member, (or all of them together) must first, make the decision and then, MAKE the call to the doctor. I hope, if linda is still reading these posts, that she can muster the strength during this difficult and challenging time, with the support of a close family member and friend by her side, to make that call (if it hasn't already been made--I hope for husband's sake, it has been made). It is heartbreaking to read that this poor man is still suffering when hospice care is free and available for cases/situations exactly like this.
  • PawPaw J
    PawPaw J Member Posts: 34 Member
    #33
    mrspjd said:

    Hospice is ALWAYS an
    Hospice is ALWAYS an option...a compassionate option. But in order for it to be an option, some one, a loved one, a caregiver, linda, a close family member, (or all of them together) must first, make the decision and then, MAKE the call to the doctor. I hope, if linda is still reading these posts, that she can muster the strength during this difficult and challenging time, with the support of a close family member and friend by her side, to make that call (if it hasn't already been made--I hope for husband's sake, it has been made). It is heartbreaking to read that this poor man is still suffering when hospice care is free and available for cases/situations exactly like this.

    Hospice is truly a blessing
    Hospice is truly a blessing with your situation at this point. I had them there with both my mom and dad from earlier on until the end. They can help with anything and everything. One cannot imagine all they can do until you experience their involvement. May God bless you all.
  • lindachampagne60
    lindachampagne60 Member Posts: 16
    #34
    mrspjd said:

    Hospice is ALWAYS an
    Hospice is ALWAYS an option...a compassionate option. But in order for it to be an option, some one, a loved one, a caregiver, linda, a close family member, (or all of them together) must first, make the decision and then, MAKE the call to the doctor. I hope, if linda is still reading these posts, that she can muster the strength during this difficult and challenging time, with the support of a close family member and friend by her side, to make that call (if it hasn't already been made--I hope for husband's sake, it has been made). It is heartbreaking to read that this poor man is still suffering when hospice care is free and available for cases/situations exactly like this.

    prostate
    Yes Mrspjd, i am still reading the post. My husband slept 24 hours straight, no food and no beer, ,,,,, did i ,mention he drinks 18 beers a day? He has methadone and one other for pain. He oesnt want hospice, not yet
  • SeattleJ
    SeattleJ Member Posts: 32 Member
    #35
    lindachampagne60 said:

    prostate
    Yes Mrspjd, i am still reading the post. My husband slept 24 hours straight, no food and no beer, ,,,,, did i ,mention he drinks 18 beers a day? He has methadone and one other for pain. He oesnt want hospice, not yet

    Hospice is also for the caregiver
    Having been involved with hospice as both a caregiver and volunteer, I can't say enough about what they do. I don't know your true situation--no one can--but please know that hospice is as much or more for your help as your husband's. His wishes are important but he may no longer have the ability to decide for himself what is best. You may have to do that both for him and for you. At least call and discuss the situation with a hospice worker. Even if they don't come to your home, they can help you. You have to take care of yourself in order to help your husband.

    Wishing you strength through this difficult time.

    John
  • Randall72
    Randall72 Member Posts: 34
    #36
    VA sentence
    Linda,my heart and prayers go out to you and your husband.You mentioned he was a veteran.You also mentioned he 66y/o,could there be a link between his PCa and Agent Orange?I have heard and read about this not only here but also news reports,even Sen.McCain,has somewhat recongized, that their "might be" a chance of AO causing PCa.This may be another question to ask VA Drs. Again,be strong,positive as best you can.
  • hunter49
    hunter49 Member Posts: 247 Member
    #37
    never quit. In 1993 jink
    never quit. In 1993 jink bond financier Micheal Milken had a PSA of 29 and was given a year. Today he raises hundreeds of millions of dollars a year to find a cure for this disease
  • mrspjd
    mrspjd Member Posts: 694 Member
    #38
    SeattleJ said:

    Hospice is also for the caregiver
    Having been involved with hospice as both a caregiver and volunteer, I can't say enough about what they do. I don't know your true situation--no one can--but please know that hospice is as much or more for your help as your husband's. His wishes are important but he may no longer have the ability to decide for himself what is best. You may have to do that both for him and for you. At least call and discuss the situation with a hospice worker. Even if they don't come to your home, they can help you. You have to take care of yourself in order to help your husband.

    Wishing you strength through this difficult time.

    John

    Similar experience
    John, that is my experience with hospice also. Sometimes there is unintentional denial and even bitterness on the part of the caregiver/family/loved ones, as the burden and responsibility of difficult decisions fall on their shoulders...decisions that no longer can be made by a patient who may be incoherent, self-medicating, or acting irrationally due to advanced/end stage disease.

    You couldn't be more right about hospice being a compassionate choice as much for the caregiver as for the patient. Here’s a very good website about hospice care services. Be sure to scan down the page and click on each of the hospice sub-headings:
    http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3356

    Be well.
  • Rwaydemo
    Rwaydemo Member Posts: 6
    edited January 2017 #39
    lindachampagne60 said:

    prostate cancer
    Thankyou for your post and answering me. He is 66 years old, NEVER had any treatment and NEVER had a biopsy. It was the VA that told him he had three to six months to live, I just dont see that happening, although he is suffering

    The VA

    I can't blame him for not trusting the va

Discussion Boards