can you give me the cold hard truth please? UPDATED!!!!

beacon
beacon Member Posts: 77
edited November 2013 in Prostate Cancer #1

hi again

 

i posted on here around 2.5 yrs ago, when my FIL was diagnosed with gleason 7, 3+4 and had his prostate removed.
it appeared to be contained and didn't appear to breach any margains when they looked at it after the surgery, but he was still registering a low psa score .
at the time, i asked why that would be, as from what i had read, that only meant one thing, and that was that there were still prostate cells remaining in the body, and seeing as the prostate had been removed, it should have been nil, except for microscopic spread, but his surgeons assured him that can happen sometime, and we would just have to wait and see.

he had a specialist visit the other day, and his psa is now 9.5 , 2.5 yrs later ,so he has to go for scans etc now...

 

obviously, there is spread of the disease.
i have read heaps on here over the years, so i guess i know what this means, and i would like some honesty please, so we can brace our selves for the coming years.
He is only 69, and should have had many years left.
we don't want to spend the rest of his years fretting about what is to be, so what is the general deal in this case...?
is it like -10 years of hormone therapy, at which it stops working, then you get a few more years, or what?
can it take some people quite quickly?

if we know he might at least make it to 83 etc, then at least he will have had a long life, if not long enough, but if its only a few years, he will miss out on all his grandchildren...

i know "everyone is different", and people don't like saying "gee, bad news there mate" ,but i would prefer an honest average of how the story normally goes please. :(


*******UPDATE*******

 

well he got the results back from the PET scan, bobe scan and whatever the other one was, and they highlighted nothing!!!

why would that be?

 

obviously thre is microscopic metastises that aren't yet showing up, but how do you get a reading that has jumped to 9.5 psa , but shows no spread?

 

they said they'll follow him up in april.

 

should they be doing anything else at this time, or is this standard?

 

 

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    I think that you are asking

    I think that you are asking how long you can expect your father to live.

     

    The cold hard truth is that no one is able to say,; none of us have time stamps. In fact we who have been diagnosed with prostate cancer are more likely to die from other causes, one being heart disease, so it is prudent to live a heart healthy life style. This way of living is also prostate cancer friendly. Exercise to include resistance training is very important for those on hormone therapy.

    Lately the number of hormone therapies that are available ,  are growing geometrically, that is the arsenal of weapons to fight the bandit are great and still growing. Additionally there are high tech diagnostic test that are now availalbe to target where and how much cancer there is; this includes but not limited to 3-T MRI, Pet Scans using acetate or other new material for more defined results.

    In this thread there are various high tech diagnostic tests mentioned

     

    http://csn.cancer.org/node/258414

     It is important for your father to have a Medical Oncologist, the best that you can afford to lead his medical team. Please note that there are about 30 in the united states that specialize in prostate cancer.

    Additionally it is worthwhile to interview a radiation oncologist

      

    By the way, it is important for any sons or close relative to have an annual PSA and Digital Rectal Exam; additionally women need to be screened for breast cancer, since there is a correlation between PC and BC among certain groups. Everyone needs to eat heart healthy.

  • beacon
    beacon Member Posts: 77

    I think that you are asking

    I think that you are asking how long you can expect your father to live.

     

    The cold hard truth is that no one is able to say,; none of us have time stamps. In fact we who have been diagnosed with prostate cancer are more likely to die from other causes, one being heart disease, so it is prudent to live a heart healthy life style. This way of living is also prostate cancer friendly. Exercise to include resistance training is very important for those on hormone therapy.

    Lately the number of hormone therapies that are available ,  are growing geometrically, that is the arsenal of weapons to fight the bandit are great and still growing. Additionally there are high tech diagnostic test that are now availalbe to target where and how much cancer there is; this includes but not limited to 3-T MRI, Pet Scans using acetate or other new material for more defined results.

    In this thread there are various high tech diagnostic tests mentioned

     

    http://csn.cancer.org/node/258414

     It is important for your father to have a Medical Oncologist, the best that you can afford to lead his medical team. Please note that there are about 30 in the united states that specialize in prostate cancer.

    Additionally it is worthwhile to interview a radiation oncologist

      

    By the way, it is important for any sons or close relative to have an annual PSA and Digital Rectal Exam; additionally women need to be screened for breast cancer, since there is a correlation between PC and BC among certain groups. Everyone needs to eat heart healthy.

    Thanks for your reply.
    He

    Thanks for your reply.

    He lives in Australia, so unfortunately the medical system works a little differently than in the usa...
    I think because you go publically, there is only so much choice in who you use etc...

    when you talk about resistance training, while having hormone therapy- i thought resistance training, building muscle encouraged production of testosterone?
    isn't that counter productive? how does that work?
    i have read that vigorous exercise is very important and gives a greater longevity on average than those who don't.

    also, what age should guys have a psa test from?
    his sons are around 40, but both very fit and athletic, and one has eaten a vegan diet for the last 8 yrs.

    i hate seeing the look on my husbands face, reading the news about his father, knowing theres nothing that can be said or done to make it better....
    i just know too many people with cancer at the moment.
    my aunty is having chemo and rads for tumours in the breast, but they haven't actually found the primary.
    she had uterine cancer a number of years ago, but they got it very very early and it was not symptomatic, but she had a dream something was wrong, and had investigations that found it, but they just don' know if this is a recurrence, or something else, but either was, its obviously not good news...
    the list of people goes on, and i hate it...the kids have so many different people they pray for every night now, i'm hoping they dont get paranoid for their own health.

    its just wrong, isn't it?

  • Rakendra
    Rakendra Member Posts: 197 Member
    No Telling

    Exactly.  One of the mysteries of this disease is that there is no telling "what to expect."  Some pass faster earlier than could be expected and others go on and on against the odds.  You see, it is not only about the bandit.  It is also about your immune system, present and past life style, emotional outlook, and decisions that you now make about treatment.  How far do you want to go to treat?  Most will diet and make a valiant effort.  Others will go to far out decisions using naturopathic support, spiritual support, and try just about anything to extend life.  We are made up of our past experiences, prejudices, and both ignorance and wisdom.  As the  treatments offered are many in both regular medical practice and esoteric treatments, no one can tell for sure "what is the best course to follow."  The only one way to absolutely win is to make each second of life count and celebrate that there IS some time left.  The message of the bandit is about changing your life, and that message is not only about health decisions.  There is always a higher spiritual message in any gift that is given, and Pca is a gift, just like every other event in your life.  Pca is life altering.  It is not only a medical event.  It is also a spiritual event, and the end result is not foretold in suffering.  The end result can also be celebration of a new life, a new way of thinking, a new found gratitude for everything that has been given, whether you like it or not.

    All ways living love always, swami Rakendra

    PS I just read your last post.  No, it is not wrong.  The way the spiritual world works is you always get what you need to grow and find your own unique path.  Pca is notice that you are not getting the job done and that time is short and you need to get on with it.  Nothing comes uninvited or without value.  The only valid prayer is, "Thank for all I have been given.  I am grateful for each and every experience that comes into my life, for I am aware that every thing I am given is for my benefit and for the lessons I need to learn for my spiritual growth."  You are NOT in a fight.  You are in a path that demands change, not only medical and physical, but also spiritual.   

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    beacon said:

    Thanks for your reply.
    He

    Thanks for your reply.

    He lives in Australia, so unfortunately the medical system works a little differently than in the usa...
    I think because you go publically, there is only so much choice in who you use etc...

    when you talk about resistance training, while having hormone therapy- i thought resistance training, building muscle encouraged production of testosterone?
    isn't that counter productive? how does that work?
    i have read that vigorous exercise is very important and gives a greater longevity on average than those who don't.

    also, what age should guys have a psa test from?
    his sons are around 40, but both very fit and athletic, and one has eaten a vegan diet for the last 8 yrs.

    i hate seeing the look on my husbands face, reading the news about his father, knowing theres nothing that can be said or done to make it better....
    i just know too many people with cancer at the moment.
    my aunty is having chemo and rads for tumours in the breast, but they haven't actually found the primary.
    she had uterine cancer a number of years ago, but they got it very very early and it was not symptomatic, but she had a dream something was wrong, and had investigations that found it, but they just don' know if this is a recurrence, or something else, but either was, its obviously not good news...
    the list of people goes on, and i hate it...the kids have so many different people they pray for every night now, i'm hoping they dont get paranoid for their own health.

    its just wrong, isn't it?

      At 40, it's time for

     

     

     

     

    At 40, it's time for his sons to start an annual test of PSA and a Digital Rectal Exam as part of their physicals. There is a greater chance of family members developing PC and need to be tested earlier than the general population. They need to keep a copy of their records so that the rate of change in the PSA can be noted. There may be a correlation between diet and PCa, so it is very good that one son eats a vegan diet, but he still needs to be tested.

     

    Many of the hormones stop the production of testosterone, so men gain lots of weight; resistance and cardio trainning are important to combat this trend, and be heart healthy......if any testosterone is produced by exercise, the hormones more than compensate for this.

     

    By the way it is a good idea for your father to have his testosterone level tested now, additionally a bone density test (DEXA), and an ECG  as a benchmark for now and the future. 

     

    You mention knowing people with cancer.....well, one's radar goes up after diagnosis...now, lots of cancers, in fact my aged mother was diagnosed with breast cancer(just a typical family)

     

  • Trew
    Trew Member Posts: 932 Member
    My father was Dx with PCa

    My father was Dx with PCa when he was in his 70s.  He had surgery, hormone shots, his PSA has bounced around since but he will be 92 in January.  This PC is rather unpredictable.  Sometimes it goes through a man in a few years and he's dead.  Some men like my dad are like the energizer bunny. 

     

    I would suggest you not let go of hope yet.     

  • beacon
    beacon Member Posts: 77
    Trew said:

    My father was Dx with PCa

    My father was Dx with PCa when he was in his 70s.  He had surgery, hormone shots, his PSA has bounced around since but he will be 92 in January.  This PC is rather unpredictable.  Sometimes it goes through a man in a few years and he's dead.  Some men like my dad are like the energizer bunny. 

     

    I would suggest you not let go of hope yet.     

    thank you so much for all

    thank you so much for all your replies.

    my FIL is a remarkable man, he runs a charity (for which he recieves no payment) and helps many ,many poor people overseas.
    he lives a simple life himself, and he and his wifes work is focused on other people's benefit , and yes, he is a spiritual man.

    There is so much more good he can do in this world, it would be a shame to lose him too soon.

    thanks for your encouragement and information.

  • beacon
    beacon Member Posts: 77
    Rakendra said:

    No Telling

    Exactly.  One of the mysteries of this disease is that there is no telling "what to expect."  Some pass faster earlier than could be expected and others go on and on against the odds.  You see, it is not only about the bandit.  It is also about your immune system, present and past life style, emotional outlook, and decisions that you now make about treatment.  How far do you want to go to treat?  Most will diet and make a valiant effort.  Others will go to far out decisions using naturopathic support, spiritual support, and try just about anything to extend life.  We are made up of our past experiences, prejudices, and both ignorance and wisdom.  As the  treatments offered are many in both regular medical practice and esoteric treatments, no one can tell for sure "what is the best course to follow."  The only one way to absolutely win is to make each second of life count and celebrate that there IS some time left.  The message of the bandit is about changing your life, and that message is not only about health decisions.  There is always a higher spiritual message in any gift that is given, and Pca is a gift, just like every other event in your life.  Pca is life altering.  It is not only a medical event.  It is also a spiritual event, and the end result is not foretold in suffering.  The end result can also be celebration of a new life, a new way of thinking, a new found gratitude for everything that has been given, whether you like it or not.

    All ways living love always, swami Rakendra

    PS I just read your last post.  No, it is not wrong.  The way the spiritual world works is you always get what you need to grow and find your own unique path.  Pca is notice that you are not getting the job done and that time is short and you need to get on with it.  Nothing comes uninvited or without value.  The only valid prayer is, "Thank for all I have been given.  I am grateful for each and every experience that comes into my life, for I am aware that every thing I am given is for my benefit and for the lessons I need to learn for my spiritual growth."  You are NOT in a fight.  You are in a path that demands change, not only medical and physical, but also spiritual.   

     

    i just read your response to

    i just read your response to my husband, and he appreciated the wise words also...

  • beacon
    beacon Member Posts: 77
    beacon said:

    thank you so much for all

    thank you so much for all your replies.

    my FIL is a remarkable man, he runs a charity (for which he recieves no payment) and helps many ,many poor people overseas.
    he lives a simple life himself, and he and his wifes work is focused on other people's benefit , and yes, he is a spiritual man.

    There is so much more good he can do in this world, it would be a shame to lose him too soon.

    thanks for your encouragement and information.

    see update above

    see update above

  • beacon
    beacon Member Posts: 77
    anyone?
    *******UPDATE*******

    anyone?

    *******UPDATE*******

     

    well he got the results back from the PET scan, bone scan and whatever the other one was, and they showed nothing!!!

    why would that be?

     

    obviously thre is microscopic metastises that aren't yet showing up, but how do you get a reading that has jumped to 9.5 psa , but shows no spread?

     

    they said they'll follow him up in april.

     

    should they be doing anything else at this time, or is this standard?

     

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    beacon said:

    anyone?
    *******UPDATE*******

    anyone?

    *******UPDATE*******

     

    well he got the results back from the PET scan, bone scan and whatever the other one was, and they showed nothing!!!

    why would that be?

     

    obviously thre is microscopic metastises that aren't yet showing up, but how do you get a reading that has jumped to 9.5 psa , but shows no spread?

     

    they said they'll follow him up in april.

     

    should they be doing anything else at this time, or is this standard?

     

    Cure or Control at the expenes of QoL

    Beacon

    Your post shows anxiety. This is bad in PCa cases. Stress and negative thinking are friendly of the bandit. Get the courage to confront the situation and consult doctors (second opinion) to get a clue of what is happening to your FIL.
    In my view there is no time table to define periods of survival of any treatment but one can compare his status against other examples and imagine a future.

    Quite often we read reports of negative image studies in a constant increase of PSA. This is typical, particularly in micrometastases cases. There is no way to detect the bandit when these are tinny but is spread in several colonies producing higher volume of serum PSA. And such is frustrating.
    I wonder why his doctor has not considered yet recurrence. Probably he found other reasons for the increased PSA. You can get a second test and follow with the opinion of other oncologist.

    In any case a PSA of 9.5 does not mean death and I cannot see any reason on your posts that would indicate that he will only live till 83 yo. He could die of other causes.

    I do not know much about his past history and chronology of events, however, recurrence from RP is treated with RT or HT, depending on the patient’s age and status. The combo of HT plus RT is also advisable but increasing the number of therapies may correspond to a lower quality of living for the increased risks and side effects. The trending between being cured, control and QoL is difficult to define.
    Balancing is what I would recommend. The field for RT administration can be chosen to lessen the degree of the RT side effects but at a price for lower chances of cure. Hormonal treatment is palliative but it manages to control the bandit for extended periods if one’s cancer is responsive to hormonal manipulations.
    Changing life style, diet and fitness all are beneficial to handle PCa cases. Try not to panic and read as many books as you can on recurrence and systemic PCa.

    Wishing you and your family peace of mind.  Innocent

    Best wishes.

    VGama  Wink