PSA 18-58-4111-5800

CaregiverX2
CaregiverX2 Member Posts: 6
edited March 2014 in Prostate Cancer #1
I'm a full-time caregiver for my parents. (Mom-Alzheimer's & Parksinson's)
Dad with a heart condition & has not been open to my going into Doctor appts.
His Primary Care Physician called me to say his PSA was 4111 & that I needed to
get Dad to the oncologist. His prostrate removed 1997 & when I asked Dad about it, he told me not to worry about it. He's had a death wish for years & figures if he just ignores it he'll drop dead. He's been in terrible pain for months & last week he finally agreed to see the Oncologist.

(PSA: 18 June/08; 58 June/09; October/10 4111 & NOW 5800......
Iron levels are undectable
Blood test show internal bleeding

He had bone scan Friday & the radiologist showed my husband the hot spots.
full spine; left shoulder & collarbone; full hips & pelvis.

This has caught me off-guard & I can't even think of what to ask the doctor.

Any input would be greatly appreciated.

We go back for the results on Wednesday.

Jean
Orlando, Fl

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    #2
    Late Stage Prostate Cancer
    Jean,

    I'm sorry that you find yourself in this difficult situation. From what you have described, your father appears to be suffering from late stage prostate cancer that has spread to the bones and other organs. Even though his prostate was removed several years ago, prostate cancer sometimes returns and without additional treatment will continue to grow in the tissue that surrounds the area where the prostate used to be and eventually spreads to nearby organs, lymph nodes, and finally in late stages to the bones. This late stage of prostate cancer cannot be cured although it can be treated to reduce the symptoms. Treatments can include radiation to specific areas in the bone where the cancer has spread, blood transfusions, and other pain medications. All of these treatments are aimed at reducing pain and making your father as comfortable as possible. I am sure the oncologist will brief you on what options you have when you consult with him next week.

    Additionally, your father's "death wish" may be a sign that he is suffering from depression. Many oncologists are familiar with this because it frequently accompanies a cancer diagnosis but I would urge you to explain in detail your father's mood and mental condition since there drugs that can treat clinical depression and it will make your life much easier as well as improving his outlook in this stage of his life.

    The PSA test your father had in 2008 was a strong indicator that his cancer had returned. There is no possible reason for a PSA score so high except for recurring prostate cancer and I am surprised your doctor did not immediately recommend your father to an oncologist at that time. You may wish to ask about that.


    It is difficult to speculate how much time your father may have left and long term prognosis varies widely but the average life expectancy is usually 1 to 3 years. If your father is suffering a very advanced stage as might be suggested by his PSA score, internal bleeding, and level of pain, it could be only a matter of months. On the other hand, there are many men who live several years with this diagnosis. Your oncologist will be able to give you a better idea after he assesses your father's complete medical situation.

    As caregiver for both your mother and father you have some difficult decisions to make. I know that taking care of a relative with Alzheimer's and Parkinson disease is more than a full time job. Adding your father's condition into the mix makes it especially difficult for you to manage. Depending on what your situation at home is and whether or not there are other siblings or family to help, you may wish to consider hospice as a potential option for your father. A hospice can focus on his quality of life and make sure he gets the care he needs while leaving you free to care for your mother. If you are active in a church they may have an outreach program or other ways to help you through this period. You should also check into the social services available to you in your area. You may have other options too but it just seems to me that caring for both your parents with the medical conditions you have described may be rapidly approaching the limits to what you can do.

    Your oncologist will likely discuss many potential treatments with you and your father. Be sure you ask what the potential side effects are for these treatments and understand the potential impact on your quality of life as you consider options.

    Again, I am so sorry that you find yourself dealing with this difficult situation. I wish you the best.
  • mrspjd
    mrspjd Member Posts: 694 Member
    #3
    Kongo said:

    Late Stage Prostate Cancer
    Jean,

    I'm sorry that you find yourself in this difficult situation. From what you have described, your father appears to be suffering from late stage prostate cancer that has spread to the bones and other organs. Even though his prostate was removed several years ago, prostate cancer sometimes returns and without additional treatment will continue to grow in the tissue that surrounds the area where the prostate used to be and eventually spreads to nearby organs, lymph nodes, and finally in late stages to the bones. This late stage of prostate cancer cannot be cured although it can be treated to reduce the symptoms. Treatments can include radiation to specific areas in the bone where the cancer has spread, blood transfusions, and other pain medications. All of these treatments are aimed at reducing pain and making your father as comfortable as possible. I am sure the oncologist will brief you on what options you have when you consult with him next week.

    Additionally, your father's "death wish" may be a sign that he is suffering from depression. Many oncologists are familiar with this because it frequently accompanies a cancer diagnosis but I would urge you to explain in detail your father's mood and mental condition since there drugs that can treat clinical depression and it will make your life much easier as well as improving his outlook in this stage of his life.

    The PSA test your father had in 2008 was a strong indicator that his cancer had returned. There is no possible reason for a PSA score so high except for recurring prostate cancer and I am surprised your doctor did not immediately recommend your father to an oncologist at that time. You may wish to ask about that.


    It is difficult to speculate how much time your father may have left and long term prognosis varies widely but the average life expectancy is usually 1 to 3 years. If your father is suffering a very advanced stage as might be suggested by his PSA score, internal bleeding, and level of pain, it could be only a matter of months. On the other hand, there are many men who live several years with this diagnosis. Your oncologist will be able to give you a better idea after he assesses your father's complete medical situation.

    As caregiver for both your mother and father you have some difficult decisions to make. I know that taking care of a relative with Alzheimer's and Parkinson disease is more than a full time job. Adding your father's condition into the mix makes it especially difficult for you to manage. Depending on what your situation at home is and whether or not there are other siblings or family to help, you may wish to consider hospice as a potential option for your father. A hospice can focus on his quality of life and make sure he gets the care he needs while leaving you free to care for your mother. If you are active in a church they may have an outreach program or other ways to help you through this period. You should also check into the social services available to you in your area. You may have other options too but it just seems to me that caring for both your parents with the medical conditions you have described may be rapidly approaching the limits to what you can do.

    Your oncologist will likely discuss many potential treatments with you and your father. Be sure you ask what the potential side effects are for these treatments and understand the potential impact on your quality of life as you consider options.

    Again, I am so sorry that you find yourself dealing with this difficult situation. I wish you the best.

    caregiver too
    Caregiverx2,
    I, too, am sorry you find yourself and your family in this difficult position. Kongo has given you some excellent info. You may also wish to read a recent post (on this PCa discussion board) on the subject of advanced PCa that might be helpful by a user named "susiebelle." Just copy and paste this link into your browser: http://csn.cancer.org/node/203421

    Ask your doctor about compassionate use of Abiraterone, an ADT (androgen deprivation therapy) drug that, while not yet FDA approved, has shown remarkable results in trials for late stage PCa. Besides ADT drugs, chemo drug therapy is also an option to ask about. Use the search box on the PCa home page (top right side) to do a search of a drug or topic in order to find & read info in posts about that subject, etc. Of course, all these treatments to relieve pain may come with their own side effects--so be sure you & dad are well informed.

    As Kongo also mentioned, the likely depression your father is suffering from may affect his ability to make sound treatment decisions (or to take no treatment at all). Perhaps he only wants to treat the pain. It is a slippery slope to deal with and hopefully his doctor will be helpful & cooperative. If you don't already have a durable power of attorney for health care for your dad (and mom), now is the time to obtain it. This will give you the ability to act on your father's behalf re medical decisions, obtain his medical records & info, and speak directly to his doctors, etc. if he is unable/unwilling to do so.

    While his apparent desire to die is unsettling, it may come down to respecting his wishes, in which case hospice care will be helpful and is 100% covered by medicare. Your parents are lucky to have such a caring and compassionate daughter.
    Good luck and all the best,
    mrs pjd
  • CaregiverX2
    CaregiverX2 Member Posts: 6
    #4
    mrspjd said:

    caregiver too
    Caregiverx2,
    I, too, am sorry you find yourself and your family in this difficult position. Kongo has given you some excellent info. You may also wish to read a recent post (on this PCa discussion board) on the subject of advanced PCa that might be helpful by a user named "susiebelle." Just copy and paste this link into your browser: http://csn.cancer.org/node/203421

    Ask your doctor about compassionate use of Abiraterone, an ADT (androgen deprivation therapy) drug that, while not yet FDA approved, has shown remarkable results in trials for late stage PCa. Besides ADT drugs, chemo drug therapy is also an option to ask about. Use the search box on the PCa home page (top right side) to do a search of a drug or topic in order to find & read info in posts about that subject, etc. Of course, all these treatments to relieve pain may come with their own side effects--so be sure you & dad are well informed.

    As Kongo also mentioned, the likely depression your father is suffering from may affect his ability to make sound treatment decisions (or to take no treatment at all). Perhaps he only wants to treat the pain. It is a slippery slope to deal with and hopefully his doctor will be helpful & cooperative. If you don't already have a durable power of attorney for health care for your dad (and mom), now is the time to obtain it. This will give you the ability to act on your father's behalf re medical decisions, obtain his medical records & info, and speak directly to his doctors, etc. if he is unable/unwilling to do so.

    While his apparent desire to die is unsettling, it may come down to respecting his wishes, in which case hospice care will be helpful and is 100% covered by medicare. Your parents are lucky to have such a caring and compassionate daughter.
    Good luck and all the best,
    mrs pjd

    Thank you
    I'll definitely research advanced stage. Thank you for your kind words.
    I'll let you know what the oncologist says on Thursday.
    Hugs,
    jean
  • CaregiverX2
    CaregiverX2 Member Posts: 6
    #5
    Kongo said:

    Late Stage Prostate Cancer
    Jean,

    I'm sorry that you find yourself in this difficult situation. From what you have described, your father appears to be suffering from late stage prostate cancer that has spread to the bones and other organs. Even though his prostate was removed several years ago, prostate cancer sometimes returns and without additional treatment will continue to grow in the tissue that surrounds the area where the prostate used to be and eventually spreads to nearby organs, lymph nodes, and finally in late stages to the bones. This late stage of prostate cancer cannot be cured although it can be treated to reduce the symptoms. Treatments can include radiation to specific areas in the bone where the cancer has spread, blood transfusions, and other pain medications. All of these treatments are aimed at reducing pain and making your father as comfortable as possible. I am sure the oncologist will brief you on what options you have when you consult with him next week.

    Additionally, your father's "death wish" may be a sign that he is suffering from depression. Many oncologists are familiar with this because it frequently accompanies a cancer diagnosis but I would urge you to explain in detail your father's mood and mental condition since there drugs that can treat clinical depression and it will make your life much easier as well as improving his outlook in this stage of his life.

    The PSA test your father had in 2008 was a strong indicator that his cancer had returned. There is no possible reason for a PSA score so high except for recurring prostate cancer and I am surprised your doctor did not immediately recommend your father to an oncologist at that time. You may wish to ask about that.


    It is difficult to speculate how much time your father may have left and long term prognosis varies widely but the average life expectancy is usually 1 to 3 years. If your father is suffering a very advanced stage as might be suggested by his PSA score, internal bleeding, and level of pain, it could be only a matter of months. On the other hand, there are many men who live several years with this diagnosis. Your oncologist will be able to give you a better idea after he assesses your father's complete medical situation.

    As caregiver for both your mother and father you have some difficult decisions to make. I know that taking care of a relative with Alzheimer's and Parkinson disease is more than a full time job. Adding your father's condition into the mix makes it especially difficult for you to manage. Depending on what your situation at home is and whether or not there are other siblings or family to help, you may wish to consider hospice as a potential option for your father. A hospice can focus on his quality of life and make sure he gets the care he needs while leaving you free to care for your mother. If you are active in a church they may have an outreach program or other ways to help you through this period. You should also check into the social services available to you in your area. You may have other options too but it just seems to me that caring for both your parents with the medical conditions you have described may be rapidly approaching the limits to what you can do.

    Your oncologist will likely discuss many potential treatments with you and your father. Be sure you ask what the potential side effects are for these treatments and understand the potential impact on your quality of life as you consider options.

    Again, I am so sorry that you find yourself dealing with this difficult situation. I wish you the best.

    Kongo & Mrs pds
    Lots of good information to help me prepare for Wednesday.
    Dad's primary care physician has been trying to get him to go back to the Oncologist for 3+ years. When I first met him, he told me that Dad was the most bull-headed patient he had & that he was a ticking bomb. We've been caring for him since 4/1/09 and finally put our foot down with a few options for his consideration. He talks about dying every day and upsets my Mother to the point that she's starting to talking about wanting to die.

    More on Wednesday
    thank you!
    Jean
  • 2ndBase
    2ndBase Member Posts: 220
    #6
    Hospice
    I am in the same place as your father and have the same hot spots. I was given a choice of chemo and hormone treatments, which have significant side effects, and going into hospice care. My oncologist agreed that the treatments would not guarantee any extension of survival and that treating the pain would be the best for me. I am 100% happy that I am in hospice care and have nothing but good things to say about it. I do not have a death wish at all. I have a great life and am still able to work and play golf every day. The pain can be controlled with morphine and steriods if your father wants to take the meds. The pain is very severe without the drugs and the patient must stay ahead of the pain at all times. If I fail to take my meds I will be in horrible pain. To get into hospice care the oncologist must state that you have less than a year to live. Hospice care is totally free, meds, visits, etc. You can leave hospice care at any time but if you do then the care you receive is no longer free. I have been in hospice care since May and have been able to control the pain very well. I feel like I could survive about one more year, give or take. You can be a big help to your father by helping him to get the stress out of his life. I was 52 when diagnosed and will turn 60 next year. I sincerely wish you and your father all the best as you deal with this problem.
  • klaymen
    klaymen Member Posts: 2
    #7
    Abiraterone
    Hi Jean,

    I'm sorry to hear this and feel with you as I'm in a similar situation... my father suffers advanced prostate cancer, my mother suffers by dementia (probably not alzheimer, but somethng similar), they still live in their house and I'm the only one to take care, no siblings around.

    As I posted in anotehr thread just shortly, Abiraterone helped my fatehr a lot. His PSA levels were around 1400 in January (progressing), and it dropped down to 700 within just 6 weeks, which is quite impressive. And his quality of live improved a lot! Also there were no side effects in his case. The only problem that is reported in some cases is a drop of potassium in blood, but this wasn't the case with my dad. So maybe this might be an option for him, if you can get into the study.

    Andy

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