Husband - 62-YO - RP 12-8-12, Gleason 5+4=9 - Wife Worried

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Comments

  • Life Explorer
    Life Explorer Member Posts: 5
    Husband 62-y.o.; Gleason 5+4

    Dear PJP1753,

    My heart goes out to you at this difficult time.  I know all too well how you are feeling.  Three years ago my husband had surgery for prostate cancer.  Like your husband, he was found to have a very aggressive tumor (gleason score = 8).  My husband also had cancer cells in one lymph node and his PSA did not go down to zero after surgery.  My husband was 58 years old at the time of his surgery.  I was devastated.

    What we learned is that when it comes to aggressive tumors, everyone (especially doctors) seems to have a different opinion.  Don't hesitate to get a second or a third opinion.  Since your husband has been started on hormone therapy (and often aggressive cancers are sensitive to hormone therapy initially), you can get second opinions and do your own research without fear that the cancer is spreading.  

    For us, we talked to 3 urologists, a medical oncologist and a radiation oncologist, and got different recommendations from each person.  I did not like all of them; actually, one in particular, made me so angry I wanted to scream!  We read as much as we could so we could understand the ramifications of each treatment.  My husband decided to be very aggressive and go for both the hormone therapy (2 full years - although some physicians recommended 3 years) and full pelvic radiation (which some doctors said was a total waste of time).  This was the "right" decision for my husband.  You and your husband need to decide on what is "right" for him.  

    Knock on wood - my husband's PSA is undetectable right now.  We hope it will continue this way for a long time.  

    Good luck.  This is a difficult journey.  Don't look back - regrets only cause pain and can't change the present.  We are hopeful for my husband's future, and I am hopeful for yours.

    All the best,

    Life Explorer

  • BLUEpac6
    BLUEpac6 Member Posts: 43
    high psa

    To make along story short in jan.2009 I found out I had a psa of 110 gleason score of 9 and agressive carcenoma.The first doctor I went to was a robotic surgeon he said it was out of prostrate and he would not touch me.uncologist said I would have to have seeds and 35 radiation treatments and take a hormone shot and wait 90 days for treaments to begin whiich I did.I also went to cancer center of america in tulsa ok. for a second opinion and they said the some thing surgery wold be out of the question.They did do a mri and cat scan which showed a hump extending out of prostrate.I was then thinking I was going yohave to have radiation.In the mean time a frend who was worriad about me because his daddy died with prostrate cancer his doctor called me and said i needed to have the prostrate removed because if cancer returns there is not mann courses of tratments left.He put me in touch with dr.Seth lerner at Baylor Clinic Houston.OnAug.29 2009 he did rdical surgery and if he found cancer in lymph nodes he would have to sew me back up but they were not and he removed it.Ihad no side effects from the surgery and my psa stayed close to 0 for about ayear then climbed to .06 and was told I would have to have salvage radiation which I did in july 2011.I had no side effects from the radiation treatments and never really knew Iwas having radiation except for having to go take them.Since my psa has been less than.01 till feb.2013 it was .0003.At no time was hormone therapy mentoned unless none of treatments worked as hormone theropy only keeps the cancer from growing not a cure.Every case is different as you will read but mine was suppose to be as serious as it could be without metestousing.Ihad two bone scans that were negative.That 90 day hormane shot was the worst time I have had through the whole ordeal.If after your husbans surgery avd psa has not sky rocked    i do not see why he should not have radiation instead of hormone therapy.I pray your husbsnd does fine.

  • pjp1753
    pjp1753 Member Posts: 12
    BLUEpac6 said:

    high psa

    To make along story short in jan.2009 I found out I had a psa of 110 gleason score of 9 and agressive carcenoma.The first doctor I went to was a robotic surgeon he said it was out of prostrate and he would not touch me.uncologist said I would have to have seeds and 35 radiation treatments and take a hormone shot and wait 90 days for treaments to begin whiich I did.I also went to cancer center of america in tulsa ok. for a second opinion and they said the some thing surgery wold be out of the question.They did do a mri and cat scan which showed a hump extending out of prostrate.I was then thinking I was going yohave to have radiation.In the mean time a frend who was worriad about me because his daddy died with prostrate cancer his doctor called me and said i needed to have the prostrate removed because if cancer returns there is not mann courses of tratments left.He put me in touch with dr.Seth lerner at Baylor Clinic Houston.OnAug.29 2009 he did rdical surgery and if he found cancer in lymph nodes he would have to sew me back up but they were not and he removed it.Ihad no side effects from the surgery and my psa stayed close to 0 for about ayear then climbed to .06 and was told I would have to have salvage radiation which I did in july 2011.I had no side effects from the radiation treatments and never really knew Iwas having radiation except for having to go take them.Since my psa has been less than.01 till feb.2013 it was .0003.At no time was hormone therapy mentoned unless none of treatments worked as hormone theropy only keeps the cancer from growing not a cure.Every case is different as you will read but mine was suppose to be as serious as it could be without metestousing.Ihad two bone scans that were negative.That 90 day hormane shot was the worst time I have had through the whole ordeal.If after your husbans surgery avd psa has not sky rocked    i do not see why he should not have radiation instead of hormone therapy.I pray your husbsnd does fine.

    Every case IS different!

    Thank you for sharing your experience!  Very interesting to hear how your case "unfolded," and that you are doing so well right now!  My husband doesn't seem to be having any adverse reactions to the hormone therapy and for that I'm very grateful.  I understand that there is no "cure," but that this cancer is "manageable."  I just want to see it managed in the best possible way that will enable my husband a good quality of life.  Very anxious to hear what another doctor (the radiation oncologist) will recommend!

  • pjp1753
    pjp1753 Member Posts: 12
    BLUEpac6 said:

    high psa

    To make along story short in jan.2009 I found out I had a psa of 110 gleason score of 9 and agressive carcenoma.The first doctor I went to was a robotic surgeon he said it was out of prostrate and he would not touch me.uncologist said I would have to have seeds and 35 radiation treatments and take a hormone shot and wait 90 days for treaments to begin whiich I did.I also went to cancer center of america in tulsa ok. for a second opinion and they said the some thing surgery wold be out of the question.They did do a mri and cat scan which showed a hump extending out of prostrate.I was then thinking I was going yohave to have radiation.In the mean time a frend who was worriad about me because his daddy died with prostrate cancer his doctor called me and said i needed to have the prostrate removed because if cancer returns there is not mann courses of tratments left.He put me in touch with dr.Seth lerner at Baylor Clinic Houston.OnAug.29 2009 he did rdical surgery and if he found cancer in lymph nodes he would have to sew me back up but they were not and he removed it.Ihad no side effects from the surgery and my psa stayed close to 0 for about ayear then climbed to .06 and was told I would have to have salvage radiation which I did in july 2011.I had no side effects from the radiation treatments and never really knew Iwas having radiation except for having to go take them.Since my psa has been less than.01 till feb.2013 it was .0003.At no time was hormone therapy mentoned unless none of treatments worked as hormone theropy only keeps the cancer from growing not a cure.Every case is different as you will read but mine was suppose to be as serious as it could be without metestousing.Ihad two bone scans that were negative.That 90 day hormane shot was the worst time I have had through the whole ordeal.If after your husbans surgery avd psa has not sky rocked    i do not see why he should not have radiation instead of hormone therapy.I pray your husbsnd does fine.

    Every case IS different!

    oops, computer jammed up and this was sent twice!  Tried to delete the second one, looks like my only option is edit.  Sorry!

  • pjp1753
    pjp1753 Member Posts: 12

    Husband 62-y.o.; Gleason 5+4

    Dear PJP1753,

    My heart goes out to you at this difficult time.  I know all too well how you are feeling.  Three years ago my husband had surgery for prostate cancer.  Like your husband, he was found to have a very aggressive tumor (gleason score = 8).  My husband also had cancer cells in one lymph node and his PSA did not go down to zero after surgery.  My husband was 58 years old at the time of his surgery.  I was devastated.

    What we learned is that when it comes to aggressive tumors, everyone (especially doctors) seems to have a different opinion.  Don't hesitate to get a second or a third opinion.  Since your husband has been started on hormone therapy (and often aggressive cancers are sensitive to hormone therapy initially), you can get second opinions and do your own research without fear that the cancer is spreading.  

    For us, we talked to 3 urologists, a medical oncologist and a radiation oncologist, and got different recommendations from each person.  I did not like all of them; actually, one in particular, made me so angry I wanted to scream!  We read as much as we could so we could understand the ramifications of each treatment.  My husband decided to be very aggressive and go for both the hormone therapy (2 full years - although some physicians recommended 3 years) and full pelvic radiation (which some doctors said was a total waste of time).  This was the "right" decision for my husband.  You and your husband need to decide on what is "right" for him.  

    Knock on wood - my husband's PSA is undetectable right now.  We hope it will continue this way for a long time.  

    Good luck.  This is a difficult journey.  Don't look back - regrets only cause pain and can't change the present.  We are hopeful for my husband's future, and I am hopeful for yours.

    All the best,

    Life Explorer

    Thank you for the encouraging note, Life Explorer!

    I appreciate you taking the time to share your experience and the wonderful results you are enjoying at present!  I am learning so much from reading as many of the posts on this discussion board as possible!

    Finally was able to obtain the PSA scores I requested.  Most recent, done on 3/2/13, was 0.02.  The first one done post-op on 12/17 was 0.12.  9/26/12, prior to the biopsies that lead to his surgery, PSA was 7.25.  I am breathing easier today just seeing that the latest PSA is ALMOST 0!

    Also obtained a copy of the needle biopsies done on 11/20/12.  Of 12 specimens, all 12 Adenocarcinoma, 5 with Perineural invasion.  Eight had Gleason score of 7 (3+4), one was 7 (4+3), two were 9 (4+5) & one was 8 (3+5).  Tumor %'s - three were 100%, three were 95%, two were 90%, one was 85%, one was 75%, one was 70% and one was 60%.  Perhaps a better way to share that information, not sure.  Biopsies were interpreted by Healthronics Laboratory Solutions in August, GA.  Results of these biopsies were shared with my husband on 11/30/12.  RP was done 12/10/12.

    I'm anxiously awaiting the consultation with the Radiation Oncologist this Friday and am extremely grateful for all of you on this discussion board for sharing your experiences, educating me and pointing us in the right direction to make sure we've explored every avenue to ensure my husband pursues and receives the most effective treatment possible!

  • pjp1753
    pjp1753 Member Posts: 12

    Dear wife

    I am sorry for your husband's condition, and the challenges that your husband and you must face.

    First, I believe that a "doc" is a hired hand. He works for you.

    The information that you provided here is somewhat sketchy.

    The law in the United States is that a patient is entitled to his medical records. A doctor must release same. Have your husband ask for a copy of all procedures including the pathology report, all office visit notes.

    Having this information will enable you to discuss intelligently and be available for other doctor consultations.

    The highest number found in the biopsy, in your husband’s case, the Gleason 5+5=10 is the determining factor. As you realize this is very serious.

    In my opinion, a Medical Oncologist needs to be the leader of your husband’s medical team. You want the best that you can find. This type doctor is the expert on hormone therapies.

    Where do you live, hopefully we can at this board will be able to direct you to a competent Oncologist..

    Please let us know what the PSA’s have been after the surgery.

     

    Post Surgical PSA Scores

    Post Surgical PSA Scores:

    12/27 - 0.12

    3/21   - 0.02

     

  • keithafroehlichsr
    keithafroehlichsr Member Posts: 5
    Get a new doctor

    PJP

    I agree with the other poster...your husbands doctor is your hired help. If he is not a kind or compassionate listener --which everyone with a health crisis deserves then I would interview others to find that quality.

    I just joined the brave souls here with a gleason 9 biopsy on 3/18, 7 of 12 cores 7+ with 75% involved and perineural invasion. I am being treated at the National Institute of Health. My next stop is an endorectal MRI on 5/31 then surgery after. I have a persistant pain in my scapula that has not been scanned. I am planning to ensure I get a bone scan at some point in the staging process.

    I also have kidney cancer. What my wife and I have learned is that she is a fight or flight gal and since there is no flighting from Cancer then fight she does. She learned that was not good for her or me so now we just steadily and persistently research, we do not react anymore when medical personnel resist our request for information which is our absolute right to ask for and receive. We just put our requet in writing and state a time we will be at the office to pick up the information. no fuss no muss and when we get push back we just remind the personnel that it is not appropriate to make any comment about a request for information. it is natural to be terrified and anxious but it is in your best interest to find a way to manage that or the road ahead will be emotionally long and painful. Best Wishes to you and your husband.