HELP!! Diagnosed w/PCa. Now PSA going from 3.7 to 1.99 without treatment. Decision?

mokincaid
mokincaid Member Posts: 9
edited March 2014 in Prostate Cancer #1
Hi I am brand new to this board. I was diagnosed in sept with PC. My psa had gone from 2.6 to 3.72 in six months. I didnt know you werent supposed to have sex before a test. had sex night before. had psa on day of biopsy and it had went down to 3.12. Also, I was on testosterone therapy at the time. I discontinued test immediately. biopsy was positive in two out of twelve cores gleason 3+3 and 3+4 T1 stage. I made up my mind on treatmentt which is to begin in jan. had psa test yesterday and results are 1.99. same doctor same lab. I dont want to get treated if it isnt necessary but dont want to die either. any knowledge out there? I need some advice from experience. HELP

Comments

  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #2
    HELP.
    Mo:
    This is a club you had no intention of joining. The reality is that fear and anxiety will not solve any problem. Asking for advice is wise. If there is a prostate cancer group near you join it. Remember that all amateur opinions, including this one, are worth what you pay. Rushing to treatment is the WORST thing you could do, as you are apparently aware. I commend you for that.
    Now, let's take a look at this. You have been on Testosterone therapy, assuming you had a low tested T level. Right? This can certainly help to raise the risk in prostate cancer. Your doctor must have been looking at your situation closely and saw a significant rise in your psa in six months. Congratulations for such close monitoring, by the way. When the elevated psa appeared you were referred to a urologist for a biopsy, or perhaps the doctor all along was a urologist. In any case there was no sign of cancer from the digital exam as the T1 indicates, only from psa evidence. This was a conventional 12 core biopsy and your two cores had 3 and 4 grade cancer cells. There is more to the biopsy report such as how much of each core contained cancer and what proportion of 3 to 4 was found. Nonetheless, with the information we have the question is what to do at this point. You have suspended testosterone treatment. You are now aware that sexual activity may cause psa readings to be unreliable. Your most recent psa was down almost half from the elevated reading. The key issue here is that you have established cancer in your prostate. Is it ENOUGH to go to treatment about NOW, considering the significant chance of long term side effects of such treatment? Is there a risk in watching the psa closely, gathering more information, consulting other professionals and deciding at some future date?
    In your case the best first step is a second opinion. Have the biopsy slides read by an expert pathologist who is very experienced in prostate pathology. There are numerous ones in the US and some top Medical center pathologists near you could also suffice. Then, and only then, you should have a second opinion about your treatment options, including primary treatment and also active surveillance. It is likely that this should take no more than 2-3 months time for the re-reading and another opinion, preferably from a medical oncologist who has no financial interest in the mode of treatment offered. IF your current urologist (I assume) feels it is necessary for you to be treated in the next 2-3 months, He should have a very good reason which is supported by the biological facts available to him (her). In addition you should have a copy of the biopsy path report in your hands to read and understand before you leave the office.
  • mokincaid
    mokincaid Member Posts: 9
    #3
    tarhoosier said:

    HELP.
    Mo:
    This is a club you had no intention of joining. The reality is that fear and anxiety will not solve any problem. Asking for advice is wise. If there is a prostate cancer group near you join it. Remember that all amateur opinions, including this one, are worth what you pay. Rushing to treatment is the WORST thing you could do, as you are apparently aware. I commend you for that.
    Now, let's take a look at this. You have been on Testosterone therapy, assuming you had a low tested T level. Right? This can certainly help to raise the risk in prostate cancer. Your doctor must have been looking at your situation closely and saw a significant rise in your psa in six months. Congratulations for such close monitoring, by the way. When the elevated psa appeared you were referred to a urologist for a biopsy, or perhaps the doctor all along was a urologist. In any case there was no sign of cancer from the digital exam as the T1 indicates, only from psa evidence. This was a conventional 12 core biopsy and your two cores had 3 and 4 grade cancer cells. There is more to the biopsy report such as how much of each core contained cancer and what proportion of 3 to 4 was found. Nonetheless, with the information we have the question is what to do at this point. You have suspended testosterone treatment. You are now aware that sexual activity may cause psa readings to be unreliable. Your most recent psa was down almost half from the elevated reading. The key issue here is that you have established cancer in your prostate. Is it ENOUGH to go to treatment about NOW, considering the significant chance of long term side effects of such treatment? Is there a risk in watching the psa closely, gathering more information, consulting other professionals and deciding at some future date?
    In your case the best first step is a second opinion. Have the biopsy slides read by an expert pathologist who is very experienced in prostate pathology. There are numerous ones in the US and some top Medical center pathologists near you could also suffice. Then, and only then, you should have a second opinion about your treatment options, including primary treatment and also active surveillance. It is likely that this should take no more than 2-3 months time for the re-reading and another opinion, preferably from a medical oncologist who has no financial interest in the mode of treatment offered. IF your current urologist (I assume) feels it is necessary for you to be treated in the next 2-3 months, He should have a very good reason which is supported by the biological facts available to him (her). In addition you should have a copy of the biopsy path report in your hands to read and understand before you leave the office.

    Thank you
    Hi, thank you for your response. I guess I left some things out. I did have the report and I did have it read by a prominent pathologist an expert on prosttate cancer. He agreed for the most part with the original findings. One core was cancerous with a gleason score of 3+3 with 10% involvement another 3+4 with 40%. The second opinion did not agree with a finding in the left base of focal glandular. he said it was benign. I have scheduled treatment in jan with loma linda, in Ca. proton treatment. Now with this score i wonder if i should go with watchful waiting instead. i called loma linda and of course they said it would just get worse if i wait. I dont know what to do. ????????????????
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #4
    mokincaid said:

    Thank you
    Hi, thank you for your response. I guess I left some things out. I did have the report and I did have it read by a prominent pathologist an expert on prosttate cancer. He agreed for the most part with the original findings. One core was cancerous with a gleason score of 3+3 with 10% involvement another 3+4 with 40%. The second opinion did not agree with a finding in the left base of focal glandular. he said it was benign. I have scheduled treatment in jan with loma linda, in Ca. proton treatment. Now with this score i wonder if i should go with watchful waiting instead. i called loma linda and of course they said it would just get worse if i wait. I dont know what to do. ????????????????

    Mo:
    Helpful.
    This is why I suggested an opinion from a medical oncologist, one who is experienced with prostate cancer. This would be someone who is not selling a treatment. I am glad that you are willing to consider the motivation of a treatment professional when considering his (their) recommendation. Based on the Johns Hopkins recommendation for active surveillance you are at the edge of eligibility. The G4 is the compromising factor. What is your normal T level? How long on T addition?
    The real question, in my mind, is how do you find a doctor whom you trust to consider your interests first; to consider your concerns in the honest light of your medical situation? Here, I cannot help. Sometimes we must trust our inner voice.
  • Kongo
    Kongo Member Posts: 1,166 Member
    #5
    tarhoosier said:

    Mo:
    Helpful.
    This is why I suggested an opinion from a medical oncologist, one who is experienced with prostate cancer. This would be someone who is not selling a treatment. I am glad that you are willing to consider the motivation of a treatment professional when considering his (their) recommendation. Based on the Johns Hopkins recommendation for active surveillance you are at the edge of eligibility. The G4 is the compromising factor. What is your normal T level? How long on T addition?
    The real question, in my mind, is how do you find a doctor whom you trust to consider your interests first; to consider your concerns in the honest light of your medical situation? Here, I cannot help. Sometimes we must trust our inner voice.

    Good Advice
    I think tarhoosier has given you some excellent advice and recommendations. I agree with him that given your pathology of at least one core with a Gleason 4 rating, that AS might be a risky course.

    Tarhoosier's comments about considering the motivation of a medical professional that recommends a certain course are particularly germane considering a recent Wall Street Journal article that looks at the significant rise in IMRT treatments in recent years and the financial gain many referring physicans apparently have with that.

    http://online.wsj.com/article/SB10001424052748703904804575631222900534954.html

    In another thread you asked about proton therapy. I consulted with Loma Linda before deciding on another radiation treatment but I was very impressed with everyone I met with there and their approach to treating the "whole man" and not just the prostate cancer. It was my backup choice but having said that, several studies have shown that PT is no more effective than IMRT or SBRT forms of radiation at twice or three times the cost. Depending upon where you live, the out of pocket costs to move to the treatment facility for two or more months can also add a significant out of pocket cost to your overall treatment.

    I think that too often we get hung up on PSA scores rather than the cancer itself. PSA doesn't kill us. It's just one of several indicators as to what might (or might not) be going on. Whatever treatment you choose should be the best for your individual cancer characteristics and your willingness to risk the inherent side effects that go along with it. Every treatment has side effects and unknowns...some of the unknowns might not manifest themselves for years. So, as tarhoosier points out, you follow your inner voice after doing as much research and homework as possible.

    Best to you.
  • mokincaid
    mokincaid Member Posts: 9
    #6
    Kongo said:

    Good Advice
    I think tarhoosier has given you some excellent advice and recommendations. I agree with him that given your pathology of at least one core with a Gleason 4 rating, that AS might be a risky course.

    Tarhoosier's comments about considering the motivation of a medical professional that recommends a certain course are particularly germane considering a recent Wall Street Journal article that looks at the significant rise in IMRT treatments in recent years and the financial gain many referring physicans apparently have with that.

    http://online.wsj.com/article/SB10001424052748703904804575631222900534954.html

    In another thread you asked about proton therapy. I consulted with Loma Linda before deciding on another radiation treatment but I was very impressed with everyone I met with there and their approach to treating the "whole man" and not just the prostate cancer. It was my backup choice but having said that, several studies have shown that PT is no more effective than IMRT or SBRT forms of radiation at twice or three times the cost. Depending upon where you live, the out of pocket costs to move to the treatment facility for two or more months can also add a significant out of pocket cost to your overall treatment.

    I think that too often we get hung up on PSA scores rather than the cancer itself. PSA doesn't kill us. It's just one of several indicators as to what might (or might not) be going on. Whatever treatment you choose should be the best for your individual cancer characteristics and your willingness to risk the inherent side effects that go along with it. Every treatment has side effects and unknowns...some of the unknowns might not manifest themselves for years. So, as tarhoosier points out, you follow your inner voice after doing as much research and homework as possible.

    Best to you.

    Thank you all
    Thank you all for your kind words and support. I am going to do some more reseearch and I have an appointment for a consultation with another urologist. I am making it clear to him that I am looking for advice not treatment so as not to influence his recommendations. Once again thanks and I will keep you posted. The cost of therapy is not an issue as my insurance will wind up costing me the same for whatever treatment I choose.
  • curedinMO
    curedinMO Member Posts: 1
    #7
    I was diagnosed in May 2010
    I was diagnosed in May 2010 and my PSA was 1.68 my Doc found it in the finger wave. I had a biopsy and 4 of my 12 showed cancer basically with similar Gleaswon scores as yours. I was 63 at the time, I had a robotic removal of my prostate in early July and my prostate was rittled with cancer. Since the operation I am cancer free after two PSA's and I know I made the correct decision. The one thing that I learned is that you can't trust PSA levels. I hope that my situation helps you and may shed some light on what you are going through. If I can offer any other info please let me know.
  • prostateman
    prostateman Member Posts: 18
    #8
    curedinMO said:

    I was diagnosed in May 2010
    I was diagnosed in May 2010 and my PSA was 1.68 my Doc found it in the finger wave. I had a biopsy and 4 of my 12 showed cancer basically with similar Gleaswon scores as yours. I was 63 at the time, I had a robotic removal of my prostate in early July and my prostate was rittled with cancer. Since the operation I am cancer free after two PSA's and I know I made the correct decision. The one thing that I learned is that you can't trust PSA levels. I hope that my situation helps you and may shed some light on what you are going through. If I can offer any other info please let me know.

    I had a similar experience.
    I had a similar experience. I had 1 positive sample out of 12 samples in my biopsy and the 1 was only 5%. I was rated a Gleason 6 T1b. When I had surgery, the pathology report showed that I was a Gleason 4+3 and SV invasion. I guess you really never know with this cancer.
  • mokincaid
    mokincaid Member Posts: 9
    #9
    prostateman said:

    I had a similar experience.
    I had a similar experience. I had 1 positive sample out of 12 samples in my biopsy and the 1 was only 5%. I was rated a Gleason 6 T1b. When I had surgery, the pathology report showed that I was a Gleason 4+3 and SV invasion. I guess you really never know with this cancer.

    Thanks
    Thank you for the info. Sort of puts it into perspective. I REALLY appreciate ALL responses. I was just floored when I got diagnosed. Four years ago I was diagnosed with severe congestive heart failure. My doctor told me probably not more than 6 weeks to live. Now my heart has returned to about two thirds of normal for my age. I spent two days in bed after the cancer diagnosis. Twenty xanax later I decided to try to figure it out. Still working on that part but at least I got out of bed. Thanks again.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #10
    mokincaid said:

    Thanks
    Thank you for the info. Sort of puts it into perspective. I REALLY appreciate ALL responses. I was just floored when I got diagnosed. Four years ago I was diagnosed with severe congestive heart failure. My doctor told me probably not more than 6 weeks to live. Now my heart has returned to about two thirds of normal for my age. I spent two days in bed after the cancer diagnosis. Twenty xanax later I decided to try to figure it out. Still working on that part but at least I got out of bed. Thanks again.

    Initial shock
    we all go thru shock, and all the negative feelings for about 2 to 3 months after diagnosis......prostate support groups, religious services by an UPBEAT clergy person, volunteering, etc, etc.....will help

    You are fortunate to probably be diagnosed with early stage prostate cancer,,,,,,,,please stay focused and continually do research.


    good luck
  • CessnaFlyer
    CessnaFlyer Member Posts: 110
    #11
    Finasteride can make PSA decline
    It’s my understanding that if you’re taking Finasteride (Proscar) your PSA can go down as much as 50% and so some doctors double the PSA score to get an accurate level.

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