Ultra High PSA

omarisan
omarisan Member Posts: 27
edited March 2014 in Prostate Cancer #1
In Oct 02, I learned from my new primary care doctor that my PSA was elevated to around 7.0. I had my first visit to a urologist who, after verifying that my PSA was high via another PSA test, scheduled me for a biopsy which was performed in Nov 02. This biopsy was NEGATIVE. My urologist told me to have my PSA checked again in May 03, unfortunately, I had a heart attack and had a quadruple bypass in May 03 but had the PSA regardless right after leaving the hospital. I received a letter (rather than a phone call) from my urologist in Jun 03 advising that my PSA was elevated and that I should come see him. He didn't tell me in my letter that the PSA was around 29.0+ so I waited until Feb04 to have another PSA test which turned out to be 30+. A subsequent biopsy detected prostate cancer grade 9. Imaging did not show any spread to the bones or other organs. In late Mar 04, I was scheduled to have the prostate removed but my urologist did not do so as he discovered evidence of spread to the lymph nodes. I am on hormone therapy (Eligard) and will have my first follow up with my urologist on 8/13/04 and will learn the results of my PSA test I had several days ago. I have had absolutely no symptoms and, with the exception of the hot flashes, I feel great and exercise four times a week. I might add that I was with Kaiser just prior to changing systems and learning of my elevated PSA. At that time, Kaiser considered the PSA test "controversal" and never recommended that I have it checked although I was over 65. Needless to say, I am on pins and needles awaiting the results of my last PSA as well as how the hormone therapy is working. Is there anyone else out there who had a PSA as high as mine (around 30) and taking hormone therapy? If so, please let me know how you are doing. Thanks

Comments

  • Benji48
    Benji48 Member Posts: 117
    #2
    Hi, This is my story & I'm sticking to it, heh,heh. It's the truth regardless!My initial psa 6+ years ago was 30. Prior to that test I only had dre's! I had 8 biopsies taken where the Ca was only found in 2 of the sites at volumes of 5% & 20%, with a Gleason of 6. The chances of the Ca NOT being outside the capsule, according to the Partin tables is slim to none! But I opted for surgery anyway & was OK for 3+ years (o.1psa)when I had a re-occurrence (psa 1.3)underwent 36 rad. treratments & OK for 1+ years when 2nd re-occurrence happened (psa 6.0) Currently on Lupron therapy which is working (psa.01)(didn't think they can read that low!)anyway still fine, alive & kicking absolutely NO symptoms during WHOLE process.
    Benji
  • 2ndBase
    2ndBase Member Posts: 220
    #3
    My PSA was 24 and the Gleason score was 9 in Nov. 02. Due to this my urologist gave me the max. radiation allowed and hormones, Lupron. I was and remain at less than half strength, but play some golf and work in the yard and garden. I'm 53 years old. I have to take pain killers if I try to stay on my feet more than 2-3 hours a day and tire out quickly. My PSA fell to .17 after treatment but tripled in the next 6 months and if it doubles or worse by this Nov. my urologist wants me to do chemo and more hormones. Without the treatments I might not still be here and if I get insurance by the end of the year I may do more, in spite of the side effects. I cant have any more radiation on the prostate area but the side effects from what I had were not real bad. It seems odd that your first biopsy was negative, very odd. Only you can make the decisions about treatment and try to talk to as many people and doctors as you can before deciding. I dont like the inability to have sex like before but life is good and I hope for the best.
  • omarisan
    omarisan Member Posts: 27
    #4
    Benji48 said:

    Hi, This is my story & I'm sticking to it, heh,heh. It's the truth regardless!My initial psa 6+ years ago was 30. Prior to that test I only had dre's! I had 8 biopsies taken where the Ca was only found in 2 of the sites at volumes of 5% & 20%, with a Gleason of 6. The chances of the Ca NOT being outside the capsule, according to the Partin tables is slim to none! But I opted for surgery anyway & was OK for 3+ years (o.1psa)when I had a re-occurrence (psa 1.3)underwent 36 rad. treratments & OK for 1+ years when 2nd re-occurrence happened (psa 6.0) Currently on Lupron therapy which is working (psa.01)(didn't think they can read that low!)anyway still fine, alive & kicking absolutely NO symptoms during WHOLE process.
    Benji

    Benji and Mark, I guess I ain't the lone ranger when it comes down to super high PSAs. From my internet readings, it seems imperative that one tries to exercise as much as possible, especially with the hormone therapy to compensate for the loss of muscle tissue. Its either that or get fitted for a training bra. (heh, heh)
  • Mozzmo
    Mozzmo Member Posts: 30
    #5
    I have never found a website that defines what an "ultra high" PSA is....know of any sites that do? Most information I have read only describes high PSA's in the terms of what is likely indicative of Prostate Cancer. There was one site that I read that said that when the PSA goes beyond 20 it increases the likelihood that it has spread beyond the prostate. Another site said that pain is more commonplace with PSA's over 20. Other research I have read talks of participants with PSA's into the 100's. I am a bit baffled with all the numbers. Seems it varies according to the individual......even so, you would think that over time and with all the thousands of men with Prostate Cancer, that they'ld have better definitions of what is "ultra high" and what that translates into symptom-wise and treatment-wise.

    Good health & peace to all.

    David

    Good Health to All,
    David
  • Benji48
    Benji48 Member Posts: 117
    #6
    Mozzmo said:

    I have never found a website that defines what an "ultra high" PSA is....know of any sites that do? Most information I have read only describes high PSA's in the terms of what is likely indicative of Prostate Cancer. There was one site that I read that said that when the PSA goes beyond 20 it increases the likelihood that it has spread beyond the prostate. Another site said that pain is more commonplace with PSA's over 20. Other research I have read talks of participants with PSA's into the 100's. I am a bit baffled with all the numbers. Seems it varies according to the individual......even so, you would think that over time and with all the thousands of men with Prostate Cancer, that they'ld have better definitions of what is "ultra high" and what that translates into symptom-wise and treatment-wise.

    Good health & peace to all.

    David

    Good Health to All,
    David

    Hi David,
    My only comment is that I think the term "ultra-High" in this case is really a misnomer because like you I personally know of one in our group that has a psa of 60 without any symptoms, my personal experience of 30 without any, and some others in the range of 100 & others even beyond that! Also yes, comparing the psa levels & gleason scores , the Partin tables yield statistical results as to the possibility of extra-capsular situations.
    Benji
  • omarisan
    omarisan Member Posts: 27
    #7
    Benji48 said:

    Hi David,
    My only comment is that I think the term "ultra-High" in this case is really a misnomer because like you I personally know of one in our group that has a psa of 60 without any symptoms, my personal experience of 30 without any, and some others in the range of 100 & others even beyond that! Also yes, comparing the psa levels & gleason scores , the Partin tables yield statistical results as to the possibility of extra-capsular situations.
    Benji

    Benji and Mozzmo, the term "ultra high PSA" is strictly my own way of describing an unusually high PSA. Like many of us who play around the internet, I am a health/medical info junkie which sometimes creates a lot of confusion due to the flood of info, some good and some bad. Actually, urology is not my strong point, although in a few months, I think I will be able to perform roadside brain surgery(heh, heh).
  • HollyGrant
    HollyGrant Member Posts: 2
    #8
    My husband has had metatastic prostate cancer for about 8 years. His PSA once went above 24+ years ago when he went on a clinical trial. He had his prostate removed, and has been on Casodex the hormonal blocker for about 5 years. He's also had radiation several times. His PSA level has gone up and down.

    Prostate cancer tends to spread to the bones. When it is in the bones, sometimes it will not show up on a PSA test at all. My husband developed a large tumor in his spine and his PSA reading was 0.01.

    Keep up with all your checkups, and if you have any pain demand an MRI -- not just an bone scan. And enjoy life. After all he has been through, my husband is still hiking with me and our dog.
  • DAKOTAACC
    DAKOTAACC Member Posts: 2
    #9
    JULY02 PSA WAS 1729 AND MY DOCTOR DIDNT HAVE MUCH HOPE FOR ME. PROSTATE BIOPSY SHOWED 4 OF 6 AS CANCER. BONE SCAN SHOWED EXTENSIVE BONE METASIS. REGIMEN OF LUPRON, CASODEX, STRONTIUM 89 AND ZOMETA REDUCED IT TO .4 AS OF JUNE 04. ON NOV04 MY PSA HAD RISEN TO 3 AND MY ONCOLOGIST WANTED TO STOP LUPRON AND PUT ME ON TAXOTERE. I REFUSED AND OBTAINED A SECOND OPINION AND THEY PUT ME BACK ON LUPRON AND I PUT MYSELF ON SEVERAL HOMOPATHIC SUBSTANCES. TUMERIC, GRAPE SEED EXTRACT, SOY, ELLAGLIC FORMULA CONTAININT V-A,C,E+ SELINUM\. WILL HAVE MY PSA NEXT WEDNESDAY
  • DAKOTAACC
    DAKOTAACC Member Posts: 2
    #10
    JULY02 PSA WAS 1729 AND MY DOCTOR DIDNT HAVE MUCH HOPE FOR ME. PROSTATE BIOPSY SHOWED 4 OF 6 AS CANCER. BONE SCAN SHOWED EXTENSIVE BONE METASIS. REGIMEN OF LUPRON, CASODEX, STRONTIUM 89 AND ZOMETA REDUCED IT TO .4 AS OF JUNE 04. ON NOV04 MY PSA HAD RISEN TO 3 AND MY ONCOLOGIST WANTED TO STOP LUPRON AND PUT ME ON TAXOTERE. I REFUSED AND OBTAINED A SECOND OPINION AND THEY PUT ME BACK ON LUPRON AND I PUT MYSELF ON SEVERAL HOMOPATHIC SUBSTANCES. TUMERIC, GRAPE SEED EXTRACT, SOY, ELLAGLIC FORMULA CONTAININT V-A,C,E+ SELINUM\. WILL HAVE MY PSA NEXT WEDNESDAY
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #11
    Mozzmo said:

    I have never found a website that defines what an "ultra high" PSA is....know of any sites that do? Most information I have read only describes high PSA's in the terms of what is likely indicative of Prostate Cancer. There was one site that I read that said that when the PSA goes beyond 20 it increases the likelihood that it has spread beyond the prostate. Another site said that pain is more commonplace with PSA's over 20. Other research I have read talks of participants with PSA's into the 100's. I am a bit baffled with all the numbers. Seems it varies according to the individual......even so, you would think that over time and with all the thousands of men with Prostate Cancer, that they'ld have better definitions of what is "ultra high" and what that translates into symptom-wise and treatment-wise.

    Good health & peace to all.

    David

    Good Health to All,
    David

    I never found any good definition of "high" or "very high" or "ulra high" either. My first PSA was about 490, at age 56-1/2. Since I was already on dutasteride the PSA reading is supposed to be doubled. I searched for information to help me evaluate what that high a PSA result might mean, but found almost nothing.

    About a month later another PSA was slightly lower but not significantly so. After changing to another uro and getting another PSA it came back over 700. I then got a CT scan, which showed metastasis to the lymph nodes all the way up to the diaphragm. That same day the uro handed me a prescription for Casodex to take prior to my first Lupron injection, but told me to hold off until a bone scan could be done a week later. The bone scan was clear.

    A week into the Casodex I got my first Lupron. That was a bit over three months ago.

    At three months I had another PSA and it came back 1.3. Yes, that's one-point-three.

    I had no side effects from the Casodex, which was a 30-day course starting a week before the Lupron. I have only mild side effects from the Lupron, the most noticeable of which is hot flashes. I don't have any fatigue under normal circumstances, but "normal" is working at home with no real physical exertion. If I visit a large store and walk around shopping I run out of energy fast. If I have to do any physical work I'm blitzed in short order. But with my age and being out of shape, and fatigue known to be associated with metastatic PC and fatigue known to be associated with hormone therapy, and being a Type II diabetic... I can't even begin to place the blame for the fatigue. And I noticed gradually decreasing physical reserves going back at least a year or two before all of this.

    I've read here of so many who have not had results as good as mine even with PC in a much earlier stage and with what I'd call very low PSA that I'd like to know whether any of you think my results are at all unusual. The uro was so surprised that he called me personally to tell me the new PSA result, which I very much doubt he would have done had it been very much higher. He's not the calling type.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #12
    AuthorUnknown said:

    I never found any good definition of "high" or "very high" or "ulra high" either. My first PSA was about 490, at age 56-1/2. Since I was already on dutasteride the PSA reading is supposed to be doubled. I searched for information to help me evaluate what that high a PSA result might mean, but found almost nothing.

    About a month later another PSA was slightly lower but not significantly so. After changing to another uro and getting another PSA it came back over 700. I then got a CT scan, which showed metastasis to the lymph nodes all the way up to the diaphragm. That same day the uro handed me a prescription for Casodex to take prior to my first Lupron injection, but told me to hold off until a bone scan could be done a week later. The bone scan was clear.

    A week into the Casodex I got my first Lupron. That was a bit over three months ago.

    At three months I had another PSA and it came back 1.3. Yes, that's one-point-three.

    I had no side effects from the Casodex, which was a 30-day course starting a week before the Lupron. I have only mild side effects from the Lupron, the most noticeable of which is hot flashes. I don't have any fatigue under normal circumstances, but "normal" is working at home with no real physical exertion. If I visit a large store and walk around shopping I run out of energy fast. If I have to do any physical work I'm blitzed in short order. But with my age and being out of shape, and fatigue known to be associated with metastatic PC and fatigue known to be associated with hormone therapy, and being a Type II diabetic... I can't even begin to place the blame for the fatigue. And I noticed gradually decreasing physical reserves going back at least a year or two before all of this.

    I've read here of so many who have not had results as good as mine even with PC in a much earlier stage and with what I'd call very low PSA that I'd like to know whether any of you think my results are at all unusual. The uro was so surprised that he called me personally to tell me the new PSA result, which I very much doubt he would have done had it been very much higher. He's not the calling type.

    I'm now at 7 months, in my second 4-mo Lupron Depot injection. Haven't had a PSA lately. The one at 5 mos was 1.3, down from over 700.

    The fatigue I reported eased, and now I don't have any energy difficulties unless I really push myself physically. Joint pain that flared up after starting Lupron and was diagnosed in my left knee as arthritis has eased significantly. Coincidentally or not, the joint pain eased over the same short period when I began drinking pomegranate juice.

    Present regimen:
    - Lupron Depot 4-month
    - Avodart, 1 daily
    - Flomax, 3 daily
    - Pomegranate juice, 8-16 oz daily
    - Broccoli, cooked, sometimes sprouts
    - Cooked tomato products
    - Ibuprofen
    - Aspirin

    I have mild hot flashes, diminishing in the last couple of months, but no other side effects now.

    My urologist charges $3,440 for each Lupron injection. On those visits I don't see the doctor, only a nurse. When I see him on other occasions the bill is $60. Assuming he charges $60 for an office visit no matter whether I see him or a nurse, he's charging $3,380 for the Lupron. That's $10,140 per year for Lupron. It's obscene.

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