Rising PSA after RP

CThughes
CThughes Member Posts: 21
I lost a kidney 2 years ago to renal cell cancer. I had a radical prostatectomy on Jan 9, 2012' one month later PSA was 0.0. In two months it's gone up to .39. How concerned should I be. My doctor wants to do another PSA in 6 weeks. I'm having a pretty hard time mentally/emotionally as my fiancé decided to run on me 2 months to the day after the surgery.

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    PSA After RP
    CT,

    So sorry that you are here. I can very much appreciate the emotional and physical burdens you are shouldering at this point with the loss of a kidney, your prostate, and now your fiancé. You've come to a good place to get feedback from other men who have travelled a similar path with prostate cancer.

    Most urologists define a biochemical recurrence of prostate cancer as an increasing PSA above 0.2 ng/ml following a radical prostatectomy. What this means is that the surgery apparently did not remove all of the cancer or that it had spread outside your prostate before the surgery. Men with higher Gleason scores (7+) are more likely to experience this than men with lower Gleason grades so it would be helpful if you could provide more details about your initial diagnosis and the pathology of your biopsy.

    Like many other cancers, prostate cancer tends toward metastasis and travels to distant parts of the body via the blood and lymph systems as well as through direct contact. Wherever it goes it is still prostate cancer (for example you could have prostate cancer in your liver for example which would be different than liver cancer) and prostate cancer cells produce PSA. Tracking PSA enables your medical team to monitor the potential aggressiveness of the cancer by measuring its doubling time. While you don't really have enough PSA history after your RP to calculate doubling time, the rise from 0.0 a month after surgery to 0.39 is, in my lay opinion, worrisome although waiting another six weeks is probably not going to make much difference one way or the other in the long term. It will likely make your board an emotional roller coaster while you wait for the next blood test.

    Now is a good time to start researching likely next steps in battling the spread of this disease. Most doctors will want to do additional imaging to try to identify where the cancer might be but in the early stages of recurrence, even the most modern imaging equipment may not be able to pinpoint where the cancer has migrated. In these cases some form of external beam radiation to the tissue that surrounded the prostate (sometimes called the prostate bed) is frequently recommended as this is the most likely place cancer spreads to first. Many studies have shown that this radiation taken in conjunction with hormone therapy can be very effective.

    While no man wants to hear that his prostate cancer has returned (or more accurately never left) depending upon your age the statistics strongly suggest that you will die of something other than prostate cancer although too many men (about 1 in 32) will succumb to this. Fortunately advances are being made every day and I encourage you to read back through several pages of threads to read about how other men with exactly the same condition of rising PSA after surgery are dealing with this.

    Best of luck in battling this disease and I do hope you will post more information about your situation (age, Gleason, biopsy results, pre-treatment PSA history, family history) so men who have experienced this situation can give you the benefit of their personal experiences.

    K
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Kongo said:

    PSA After RP
    CT,

    So sorry that you are here. I can very much appreciate the emotional and physical burdens you are shouldering at this point with the loss of a kidney, your prostate, and now your fiancé. You've come to a good place to get feedback from other men who have travelled a similar path with prostate cancer.

    Most urologists define a biochemical recurrence of prostate cancer as an increasing PSA above 0.2 ng/ml following a radical prostatectomy. What this means is that the surgery apparently did not remove all of the cancer or that it had spread outside your prostate before the surgery. Men with higher Gleason scores (7+) are more likely to experience this than men with lower Gleason grades so it would be helpful if you could provide more details about your initial diagnosis and the pathology of your biopsy.

    Like many other cancers, prostate cancer tends toward metastasis and travels to distant parts of the body via the blood and lymph systems as well as through direct contact. Wherever it goes it is still prostate cancer (for example you could have prostate cancer in your liver for example which would be different than liver cancer) and prostate cancer cells produce PSA. Tracking PSA enables your medical team to monitor the potential aggressiveness of the cancer by measuring its doubling time. While you don't really have enough PSA history after your RP to calculate doubling time, the rise from 0.0 a month after surgery to 0.39 is, in my lay opinion, worrisome although waiting another six weeks is probably not going to make much difference one way or the other in the long term. It will likely make your board an emotional roller coaster while you wait for the next blood test.

    Now is a good time to start researching likely next steps in battling the spread of this disease. Most doctors will want to do additional imaging to try to identify where the cancer might be but in the early stages of recurrence, even the most modern imaging equipment may not be able to pinpoint where the cancer has migrated. In these cases some form of external beam radiation to the tissue that surrounded the prostate (sometimes called the prostate bed) is frequently recommended as this is the most likely place cancer spreads to first. Many studies have shown that this radiation taken in conjunction with hormone therapy can be very effective.

    While no man wants to hear that his prostate cancer has returned (or more accurately never left) depending upon your age the statistics strongly suggest that you will die of something other than prostate cancer although too many men (about 1 in 32) will succumb to this. Fortunately advances are being made every day and I encourage you to read back through several pages of threads to read about how other men with exactly the same condition of rising PSA after surgery are dealing with this.

    Best of luck in battling this disease and I do hope you will post more information about your situation (age, Gleason, biopsy results, pre-treatment PSA history, family history) so men who have experienced this situation can give you the benefit of their personal experiences.

    K

    Probable recurrence
    CT

    Welcome to the board.
    Sorry for the events in your later period of life. I hope you find some comfort in this board of survivors. You are not alone in the fight and you may expect support to guide you in dealing with your problem with PCa.

    Your PSA is higher than the previous 0.0 and your doctor wants to check a third value in 1.5 months before recommending anything. This is not unusual and it does not mean that by waiting it will jeopardy any success you could expect from an earlier/the soonest “attack”.
    Prostate cancer even in aggressive forms is slower in growing when comparing with other cancers. You have not shared other information on your case but I believe that you can wait for the next results even if the present stats may indicate recurrence. If so concerned you could request for a PSA in one month time.

    In any case you do not lose anything in advancing with researches on salvage treatments. You can google about “Salvage treatments for prostate cancer after surgery”. You can also check about survival rates among treatment options in nomograms by introducing your stats. Here is a link;
    http://www.mskcc.org/cancer-care/adult/prostate/prediction-tools

    Kongo is giving you good advice. Let us know more details so that many can provide you with their views and experiences. What is your age? Have you any permanent effect from the previous surgeries? (Renal and Prostate)

    Another bump in your life. Just hung there.

    Wishing you peace of mind.
    VGama
  • CThughes
    CThughes Member Posts: 21

    Probable recurrence
    CT

    Welcome to the board.
    Sorry for the events in your later period of life. I hope you find some comfort in this board of survivors. You are not alone in the fight and you may expect support to guide you in dealing with your problem with PCa.

    Your PSA is higher than the previous 0.0 and your doctor wants to check a third value in 1.5 months before recommending anything. This is not unusual and it does not mean that by waiting it will jeopardy any success you could expect from an earlier/the soonest “attack”.
    Prostate cancer even in aggressive forms is slower in growing when comparing with other cancers. You have not shared other information on your case but I believe that you can wait for the next results even if the present stats may indicate recurrence. If so concerned you could request for a PSA in one month time.

    In any case you do not lose anything in advancing with researches on salvage treatments. You can google about “Salvage treatments for prostate cancer after surgery”. You can also check about survival rates among treatment options in nomograms by introducing your stats. Here is a link;
    http://www.mskcc.org/cancer-care/adult/prostate/prediction-tools

    Kongo is giving you good advice. Let us know more details so that many can provide you with their views and experiences. What is your age? Have you any permanent effect from the previous surgeries? (Renal and Prostate)

    Another bump in your life. Just hung there.

    Wishing you peace of mind.
    VGama

    Thank you both for the
    Thank you both for the advise and encouragement. I am 53 years old. I did not get any Gleason numbers from my surgeon, guess I didn't ask. He said that my margins looked good and my pathology looked very good. My first PSA ever was something like 3.8, and the doctor felt this was ok as long as it didn't increase, a year later it was 4.1 and they did a biopsy and all was good. The next check, which I believe was only 6 months later was 12.something, this time the biopsy was not so good.

    I weathered the kidney loss without too much problem and had somewhat gotten over the fear every time I went back for testing. I'll have to admit that I got pretty depressed sitting around with a catheter for 3 weeks, with nothing to do but think about the changes in my life. The loss of my fiancé just when I was starting to feel human again has really knocked me down pretty bad. Now the numbers going back up is really making me crazy.
  • KathyLQ
    KathyLQ Member Posts: 100
    You're not alone
    I saw your post and had to sign on to talk to you. I'm a woman, obviously, I'm almost 60, and I have a BF who is 71 who is fighting prostate cancer.

    There are those who have good character and stick by others, and there are those who don't. I went through what you're going through. I was diagnosed with breast cancer in June 2010, and my BF invited me to his community. Our relationship was going well.. until I had a mastectomy, and it destroyed my self esteem and later the relationship. He couldn't handle it. My daughter literally picked me up at his home, and insisted I stay at her home for 2 weeks as I nearly lost it. Time does slowly heal wounds, and now I have another guy who hasn't run. And just last Nov., he had his prostate removed. His scores are rising again. And I'm not running. Friends act like friends or they're not friends.

    Lean on other friends and family, seek some support groups for friendship, seek some talk groups where you might meet some other ladies. Hang in there, time will improve things. I wish you the best!
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    KathyLQ said:

    You're not alone
    I saw your post and had to sign on to talk to you. I'm a woman, obviously, I'm almost 60, and I have a BF who is 71 who is fighting prostate cancer.

    There are those who have good character and stick by others, and there are those who don't. I went through what you're going through. I was diagnosed with breast cancer in June 2010, and my BF invited me to his community. Our relationship was going well.. until I had a mastectomy, and it destroyed my self esteem and later the relationship. He couldn't handle it. My daughter literally picked me up at his home, and insisted I stay at her home for 2 weeks as I nearly lost it. Time does slowly heal wounds, and now I have another guy who hasn't run. And just last Nov., he had his prostate removed. His scores are rising again. And I'm not running. Friends act like friends or they're not friends.

    Lean on other friends and family, seek some support groups for friendship, seek some talk groups where you might meet some other ladies. Hang in there, time will improve things. I wish you the best!

    File on your case
    CT

    You really need to get a copy of the pathologist’s report given to your doctor after surgery. The data is very important in future decisions.
    I had surgery in 2000 with a pre op PSA of 24.2 which come down to 0.18 after surgery, but from there it started climbing and recurrence was declared at 0.46. All image studies were negative to metastases and I had Gleason score of 5 (2+3). I was diagnosed with micrometastases. Later salvage radiation was recommended.

    No two cases are equal but I managed to hang in and you will do it too. Your journey with the bandit needs you to get on the driver’s seat. You should educate yourself on the problem. Kathy is right, you could find a PCa community close to your place and participate in their gatherings. You will be surprised for the much comfort you will receive.

    Hope for the best.
    VGama
  • CThughes
    CThughes Member Posts: 21

    File on your case
    CT

    You really need to get a copy of the pathologist’s report given to your doctor after surgery. The data is very important in future decisions.
    I had surgery in 2000 with a pre op PSA of 24.2 which come down to 0.18 after surgery, but from there it started climbing and recurrence was declared at 0.46. All image studies were negative to metastases and I had Gleason score of 5 (2+3). I was diagnosed with micrometastases. Later salvage radiation was recommended.

    No two cases are equal but I managed to hang in and you will do it too. Your journey with the bandit needs you to get on the driver’s seat. You should educate yourself on the problem. Kathy is right, you could find a PCa community close to your place and participate in their gatherings. You will be surprised for the much comfort you will receive.

    Hope for the best.
    VGama

    Is depression normal
    Thank you all for the encouragement. It didn't seem too bad after the kidney cancer, but since the prostate surgery, I guess the only word to describe what i've been is depressed. This is hard to admit for a big "rugged outdoorsman, ex football player " type, but after the prostate surgery I just found myself crying all the time. I was trying so hard to prove to my fiancé that I was going to beat this too, and i was so scared she wouldn't want to be with someone like me. I felt/feel so useless that I got back out in the field working way to early (one week after getting the catheter out), because I felt like I was letting everyone down at my company. My partner and I own a small environmental consulting firm, and it all relies on the two of us.

    Then my fiancé cheated on me and left 2 months after the surgery and I just can't seem to get my life back in order. Now that my PSA numbers are going up it all just seems worse. I don't know if it the multiple cancers, stress of running a buisness, the loss of the fiancé, but sometimes I just feel so overwhelmingly depressed that I just don't know what to do. Is depression normal after prostetectomy cancer. I've never been depressed before, but I have any desire to do much of anything, I've lost 20plus pounds, it's crazy. I tried a psychologist but he said yep, your depressed, but that was about it. I'm just lost
  • caseyh
    caseyh Member Posts: 63
    CThughes said:

    Is depression normal
    Thank you all for the encouragement. It didn't seem too bad after the kidney cancer, but since the prostate surgery, I guess the only word to describe what i've been is depressed. This is hard to admit for a big "rugged outdoorsman, ex football player " type, but after the prostate surgery I just found myself crying all the time. I was trying so hard to prove to my fiancé that I was going to beat this too, and i was so scared she wouldn't want to be with someone like me. I felt/feel so useless that I got back out in the field working way to early (one week after getting the catheter out), because I felt like I was letting everyone down at my company. My partner and I own a small environmental consulting firm, and it all relies on the two of us.

    Then my fiancé cheated on me and left 2 months after the surgery and I just can't seem to get my life back in order. Now that my PSA numbers are going up it all just seems worse. I don't know if it the multiple cancers, stress of running a buisness, the loss of the fiancé, but sometimes I just feel so overwhelmingly depressed that I just don't know what to do. Is depression normal after prostetectomy cancer. I've never been depressed before, but I have any desire to do much of anything, I've lost 20plus pounds, it's crazy. I tried a psychologist but he said yep, your depressed, but that was about it. I'm just lost

    Give it some time
    I'm not sure if depression after a prostate surgery is normal, but I know it isn't abnormal. I met with my surgeon a couple of weeks after my surgery and told him that I was slightly depressed. His response was that, I was “right on schedule ...give it more time and if it continues to be a problem, I will get you some help.” I can't remember how long it took, but it did resolve. Give it some time. You have been under a good deal of emotional and physical stress.
  • CThughes
    CThughes Member Posts: 21
    CThughes said:

    Is depression normal
    Thank you all for the encouragement. It didn't seem too bad after the kidney cancer, but since the prostate surgery, I guess the only word to describe what i've been is depressed. This is hard to admit for a big "rugged outdoorsman, ex football player " type, but after the prostate surgery I just found myself crying all the time. I was trying so hard to prove to my fiancé that I was going to beat this too, and i was so scared she wouldn't want to be with someone like me. I felt/feel so useless that I got back out in the field working way to early (one week after getting the catheter out), because I felt like I was letting everyone down at my company. My partner and I own a small environmental consulting firm, and it all relies on the two of us.

    Then my fiancé cheated on me and left 2 months after the surgery and I just can't seem to get my life back in order. Now that my PSA numbers are going up it all just seems worse. I don't know if it the multiple cancers, stress of running a buisness, the loss of the fiancé, but sometimes I just feel so overwhelmingly depressed that I just don't know what to do. Is depression normal after prostetectomy cancer. I've never been depressed before, but I have any desire to do much of anything, I've lost 20plus pounds, it's crazy. I tried a psychologist but he said yep, your depressed, but that was about it. I'm just lost

    be fair
    I guess I gotta be fair here. I don't know if the fiance cheated or not, that's just a conclusion you jump to I guess when your scared and alone. But fortunately I've got a great family and this forum has been a big help. Just wanted to set the record straight.
  • Kongo
    Kongo Member Posts: 1,166 Member
    CThughes said:

    be fair
    I guess I gotta be fair here. I don't know if the fiance cheated or not, that's just a conclusion you jump to I guess when your scared and alone. But fortunately I've got a great family and this forum has been a big help. Just wanted to set the record straight.

    Cheating
    Whether she cheated physically or not is moot but her departure at a time of great stress and emotional turmoil with your cancer progress can be just as damaging to your psyche. It is still a form of betrayal. I couldn't begin to imagine all the factors that come to play in this relationship but certainly the prospect of a worsening disease and adjustments to intimacy play a role. Some just can't deal with that except by leaving.

    Depression is normal when faced with these physical and emotional challenges. We come face-to-face with our mortality and realize all the things that we thought we were going to accomplish at 20 aren't going to happen. I hope you visit a doctor or therapist that can help you get through this.

    Hoping your future days are cheerier than the past few months.

    Best,

    K
  • winespider
    winespider Member Posts: 2
    psa follow up
    My PSA was 2, one year later, it was 3. My doctor said that was normal for someone my age. 76. I wanted a follow up PSA test in three months, my doctor said it was not neccessary, that we should wait a year. We waited a year, and that proved to be the wrong thing to do in my case. The PSA moved up to 8, 12 samples all showed positive and the cancer had matastisized, Gleason score 8. I have had surgery, radiation, lupron, and chemical castration. Most of which could have been avoided had PSA tests been done more frequently. I wish my doctor had said 6 weeks instead of one year. Good luck
  • ozzinc
    ozzinc Member Posts: 2
    CThughes said:

    Is depression normal
    Thank you all for the encouragement. It didn't seem too bad after the kidney cancer, but since the prostate surgery, I guess the only word to describe what i've been is depressed. This is hard to admit for a big "rugged outdoorsman, ex football player " type, but after the prostate surgery I just found myself crying all the time. I was trying so hard to prove to my fiancé that I was going to beat this too, and i was so scared she wouldn't want to be with someone like me. I felt/feel so useless that I got back out in the field working way to early (one week after getting the catheter out), because I felt like I was letting everyone down at my company. My partner and I own a small environmental consulting firm, and it all relies on the two of us.

    Then my fiancé cheated on me and left 2 months after the surgery and I just can't seem to get my life back in order. Now that my PSA numbers are going up it all just seems worse. I don't know if it the multiple cancers, stress of running a buisness, the loss of the fiancé, but sometimes I just feel so overwhelmingly depressed that I just don't know what to do. Is depression normal after prostetectomy cancer. I've never been depressed before, but I have any desire to do much of anything, I've lost 20plus pounds, it's crazy. I tried a psychologist but he said yep, your depressed, but that was about it. I'm just lost

    Post prostate mindset
    From one "football type" to another...just understand that challenges that you go through like this will weed out the people who really aren't in it for the long haul. Thing is, you shouldn't want them in there anyway. My marriage was a little shaky when I was diagnosed with my prostate cancer at age 42. She was very unsympathetic to the post prostate recovery, truth be told, she killed my self esteem from a manhood standpoint and we eventually divorced.

    The light at the end of the tunnel was that I had my prostate out on a Friday, went to Sea World on Sunday and Coached football on Monday, catheter and all. Started working out again a week later. It took 2 full years to recover sexually(my cancer was contained) and lots of awkward moment's in between. Thing is, it's not your fault, it is what it is and if your partner is not down for being patient, screw them. You deserve better.

    My Dad had/has prostate cancer...had his out at 72 and he is still with us at age 90. He gets 2 hormone shots a year to control his situation and he's still doing his thing. His PSA in his last check up a week ago was 65. He got a another shot and ultimately will probably die from something other than prostate cancer.

    Don't let the cancer define your life. It's part of it but it's just like a challenging situation at your business...you get the facts, create a plan and work through it.
    Good luck and here's to looking forward to better days.
  • aweinst00
    aweinst00 Member Posts: 3
    Kongo said:

    PSA After RP
    CT,

    So sorry that you are here. I can very much appreciate the emotional and physical burdens you are shouldering at this point with the loss of a kidney, your prostate, and now your fiancé. You've come to a good place to get feedback from other men who have travelled a similar path with prostate cancer.

    Most urologists define a biochemical recurrence of prostate cancer as an increasing PSA above 0.2 ng/ml following a radical prostatectomy. What this means is that the surgery apparently did not remove all of the cancer or that it had spread outside your prostate before the surgery. Men with higher Gleason scores (7+) are more likely to experience this than men with lower Gleason grades so it would be helpful if you could provide more details about your initial diagnosis and the pathology of your biopsy.

    Like many other cancers, prostate cancer tends toward metastasis and travels to distant parts of the body via the blood and lymph systems as well as through direct contact. Wherever it goes it is still prostate cancer (for example you could have prostate cancer in your liver for example which would be different than liver cancer) and prostate cancer cells produce PSA. Tracking PSA enables your medical team to monitor the potential aggressiveness of the cancer by measuring its doubling time. While you don't really have enough PSA history after your RP to calculate doubling time, the rise from 0.0 a month after surgery to 0.39 is, in my lay opinion, worrisome although waiting another six weeks is probably not going to make much difference one way or the other in the long term. It will likely make your board an emotional roller coaster while you wait for the next blood test.

    Now is a good time to start researching likely next steps in battling the spread of this disease. Most doctors will want to do additional imaging to try to identify where the cancer might be but in the early stages of recurrence, even the most modern imaging equipment may not be able to pinpoint where the cancer has migrated. In these cases some form of external beam radiation to the tissue that surrounded the prostate (sometimes called the prostate bed) is frequently recommended as this is the most likely place cancer spreads to first. Many studies have shown that this radiation taken in conjunction with hormone therapy can be very effective.

    While no man wants to hear that his prostate cancer has returned (or more accurately never left) depending upon your age the statistics strongly suggest that you will die of something other than prostate cancer although too many men (about 1 in 32) will succumb to this. Fortunately advances are being made every day and I encourage you to read back through several pages of threads to read about how other men with exactly the same condition of rising PSA after surgery are dealing with this.

    Best of luck in battling this disease and I do hope you will post more information about your situation (age, Gleason, biopsy results, pre-treatment PSA history, family history) so men who have experienced this situation can give you the benefit of their personal experiences.

    K

    still in shock
    2 yrs post RP with undetectable PSA, I thought I was out of the woods. Opted for robotic surgery in 2010 to avoid the fate of my father and grandfather, and the prognosis was very positive. Gleason 7, PSA 6, extremely low volume of PCA found in the post op prostate, no margins, all good. First year after surgery, ultrasensitive PSA was still at 0, but now all of a sudden at year two I'm at 1.3.

    Maybe I'm still in denial, but I'm wondering if the tetanus shot I took at the MD office caused a false positive PSA... I wish, anyway.

    Any words of advice?
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    psa follow up
    My PSA was 2, one year later, it was 3. My doctor said that was normal for someone my age. 76. I wanted a follow up PSA test in three months, my doctor said it was not neccessary, that we should wait a year. We waited a year, and that proved to be the wrong thing to do in my case. The PSA moved up to 8, 12 samples all showed positive and the cancer had matastisized, Gleason score 8. I have had surgery, radiation, lupron, and chemical castration. Most of which could have been avoided had PSA tests been done more frequently. I wish my doctor had said 6 weeks instead of one year. Good luck

    Aweinst00; Laboratory errors are rare but exist
    Aweinst00

    You should inquire with your doctor about the probable cause of the increase in PSA. In any case, after surgery (without prostate gland) any PSA can only be expected to exist if prostatic cells (benign or cancerous) were left behind or such serum relates to the tiny portion produced at the urethra walls.
    You could also try to repeat the test in a different laboratory. Laboratory errors in sampling (exchange of samples between patients) are rare but exist.

    Hope for the best.
    VG