PSA CONCERN

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  • RADIATION HOPEFUL
    RADIATION HOPEFUL Member Posts: 218

    Be Strong
    RadHope

    I am sorry for the diagnosis of osteoporosis. I wonder if you have done a density scan before so that you can compare the results. In any case the T -2.9 is conclusive of weaker bone and the hormonal therapy may affect still more any progression of the loss.

    You need to take something. You can inquire with your doctor if he would recommend you just a bisphosphonate instead of Prolia. However, not to alarm you but you should get a dental check up and dental repairs done the soonest because bisphosphonates and denosumab drugs (Prolia, Xgeva, etc) in time can cause osteonecrosis of the jaw.
    You can read about it here;
    http://dentistry.about.com/od/toothmouthconditions/a/Osteonecrosis.htm
    http://www.algaecal.com/Blog/denosumab-aka-prolia-xgeva-even-worse-than-the-bisphosphonates/11454

    As you commented “……in the mean time I must be careful not to break any bones”.

    Be strong
    VG

    DEXA SCAN
    Hello VG

    NO I never had a bone density test before & I'm VERY UPSET with the results--appreciate your reply & I'm going to do everything I can to fight this---hope it's not a losing battle.

    No Dental WORK required ---just a cleaning every 6 months. I'm going to start walking at least a mile a day & keep the meal plan of NO RED MEAT on course.
    THANKS AGAIN FOR THE REPLY

    Rad Hopeful
  • petrogc
    petrogc Member Posts: 3
    Kongo said:

    Cure?
    Hopeful,

    Forgive me if I have misremembered but I seem to recall that you were initially diagnosed with a Gleason 9 with no evidence of metastasis and your medical team launched you on a course of hormone therapy coupled with IMRT. Wasn't your original PSA reading in the 50s? Now, about 18 months later, your PSA is down to 0.28 and still dropping. I am assuming you are still receiving the Firmagon shots.

    Setting aside the apparent bluntness of this particular PA it seems to me the gist of your question is whether or not a "cure" is in the offing. There have been many discussions in this forum on whether or not there is truly a cure for prostate cancer or any cancer that is inherently metastatic for that matter. It seems that a "cure" is in the eye of the beholder.

    From what I have read in many cases that an early stage prostate cancer completely contained within the prostate gland and treated with either surgery or radiation that there is an excellent chance that the cancer will not manifest itself again. Historically, both surgery and radiation show about a 30-35% chance of biochemical recurrence characterized by rising PSA scores some time after treatment. While some of the more modern forms of radiation (such as what you received) seem to have a much lower recurrence rate in the near term, we won't know for several years whether this trend will continue at the 10 and 15 year points.

    Prostate cancers diagnosed in the intermediate and advanced stages have higher rates of recurrence. A Gleason 9, as you well know, is a dangerous cancer. Although there may not be any immediate evidence of metastasis there is a high likelihood that a Gleason 9 patient will see tumors that have spread outside the prostate via the blood or lymph systems even though they might be microscopic and otherwise undetectable. Your treatment course, which i personally think was very wise on your part, went after the cancer in an aggressive way. The radiation attacked the prostate cancer cells within the target area of the IMRT and the Firmagon works to curb cell growth in those areas that were not radiated.

    The fact that your PSA continues to drop is a good sign in my lay opinion. It suggests to me that your treatment is working as intended. What i suspect that the PA was trying to say is that the Firmagon (or any hormone therapy drug) should knock the PSA levels down to near zero levels regardless of whether or not any other treatment has occurred. I'm certainly no expert on hormone therapy and I don't know what the normal range of expected PSA scores should be given your Gleason 9 starting point. I would request an email exchange or arrange for a telephone chat with your lead physician and ask him what his opinion of a PSA = 0.28 after being on Firmagon for a year really means for a Gleason 9 patient and whether this is within a normal range or not.

    You really won't get a feel for the effectiveness of the radiation treatment until you have stopped hormone therapy and your testosterone leeks return to normal. This could take several months after you stop taking shots.

    Men who retain their prostates will never see a zero PSA score. (Although HT skews this data) Their PSA will decline until a nadir, or low point, is reached, and then stays at that level. If PSA results raise more than 2.0 ng/ml above the nadir it is usually considered a recurrence.

    One phenomena associated with radiation treatment is the PSA bounce effect where the PSA declines after treatment then inexplicably increases and then continues a decline toward nadir. Perhaps your reading was somewhere during the bounce phase? I would also query your doctor about his thoughts on PSA bounce.

    In any event your PSA continues to decline and that is a very good thing from my perspective. Whether or not there is a "cure" seems off point to me. What I think you should be asking is: Is this cancer going to progress to a terminal late stage that kills you? I think its way, way to early to draw that conclusion on that and the PA should have made that clear to you. I wish your PA had taken the time to put all of these numbers and nuances in perspective for you and I hope you seek further clarification with the doctor in person.

    Best to you.

    K

    rise in psa
    my boyfriend had his prostate removed and they recommened the 6 month lupron shot. he has a 9 gleason score. His psa level has been at 0 post surgery and help with the lupron shot, however, today he received the results from his post 6 month lupron shot and found out that his psa has rose to .10. Very emotional about the results because we dont know whats going to happen from this point. The side effects of the lupron shot are so intense that I worry if he will choose that route again. What happens now? Is it normal for the psa to rise post lupron injection? I know that we will need to discuss this with the doctor, but the doctor never called us with the results, we called them. any suggestions out there?
  • Samsungtech1
    Samsungtech1 Member Posts: 351
    petrogc said:

    rise in psa
    my boyfriend had his prostate removed and they recommened the 6 month lupron shot. he has a 9 gleason score. His psa level has been at 0 post surgery and help with the lupron shot, however, today he received the results from his post 6 month lupron shot and found out that his psa has rose to .10. Very emotional about the results because we dont know whats going to happen from this point. The side effects of the lupron shot are so intense that I worry if he will choose that route again. What happens now? Is it normal for the psa to rise post lupron injection? I know that we will need to discuss this with the doctor, but the doctor never called us with the results, we called them. any suggestions out there?

    Doctors
    You need to get another doctor. They should call you in for consultation. .1 is not bad. Lots of guys would love that reading. I would start looking for another DR. And understand that different labs get differwnt results. Do not be alarmed or excited until you get two tests.

    Good luck

    Mike
  • VascodaGama
    VascodaGama Member Posts: 3,514 Member

    Doctors
    You need to get another doctor. They should call you in for consultation. .1 is not bad. Lots of guys would love that reading. I would start looking for another DR. And understand that different labs get differwnt results. Do not be alarmed or excited until you get two tests.

    Good luck

    Mike

    Petrogc; "Zero" could be fictitious
    Petrogc

    You need to share more info (PSA history, biopsy path report, pathological stage, age, any other health problem or drugs taken, the protocol recommended by his doctor, etc.) to get better answers from the survivors here.

    The “zero” PSA post surgery seems to be fictitious. What was the real value?
    Some doctors got a fixed threshold to indicate success of the treatment and a PSA of 1.00 ng/ml could be their Zero. In such a case, a PSA = 0.10 ng/ml is lower than the Zero commented initially.
    Discuss the matter with his doctor and get a copy of all information (tests, reports, etc.) to keep a file on his case. Remember that if recurrence becomes apparent your friend will probably start consultations in another hospital/doctor and the previous data is very important.

    A PSA at 6 month after having a Lupron shot should be lower than the previous tests. However, in some guys the LHRH agonist (Lupron) is not Sufficient to control spread of cancer. Added drugs such as antiandrogens, etc, may be required.

    Second opinions in prostate cancer diagnosis and treatment are always required. Oncologists are better than the "traditional" urlogists in hormonal therapies where combination of drugs is routine.

    Wishing you well.
    VGama
  • petrogc
    petrogc Member Posts: 3

    Petrogc; "Zero" could be fictitious
    Petrogc

    You need to share more info (PSA history, biopsy path report, pathological stage, age, any other health problem or drugs taken, the protocol recommended by his doctor, etc.) to get better answers from the survivors here.

    The “zero” PSA post surgery seems to be fictitious. What was the real value?
    Some doctors got a fixed threshold to indicate success of the treatment and a PSA of 1.00 ng/ml could be their Zero. In such a case, a PSA = 0.10 ng/ml is lower than the Zero commented initially.
    Discuss the matter with his doctor and get a copy of all information (tests, reports, etc.) to keep a file on his case. Remember that if recurrence becomes apparent your friend will probably start consultations in another hospital/doctor and the previous data is very important.

    A PSA at 6 month after having a Lupron shot should be lower than the previous tests. However, in some guys the LHRH agonist (Lupron) is not Sufficient to control spread of cancer. Added drugs such as antiandrogens, etc, may be required.

    Second opinions in prostate cancer diagnosis and treatment are always required. Oncologists are better than the "traditional" urlogists in hormonal therapies where combination of drugs is routine.

    Wishing you well.
    VGama

    Correction
    Thank you so much for your response. After sending the last message about his psa being elevated, we found that his psa had not changed any from a 0 psa to a .10 post lupron shot.

    Is having a psa of .10 mean that the cancer is undetectible or is the lupron shot just a "bandaid" for the actual results in future testing? His gleason score is a 9 and with that score we are concerned about the aggression of the cancer. Do you think that we should feel hopeful that the cancer was removed during radical prostetecomy even though the pathology report says that the margins were very close and the cancer might have spread past the capsule? The other question is now that the lupron shot is at its 6 month duration, when do we think about radiation or another form of treatment before the psa rises back to a 4 like it was prior to prostatectomy?

    Bunch of questions I know.. but seems like we get more informative information from this discussion board than what we do paying hundreds of dollars for an "i dont know" from his urologist.
  • mrspjd
    mrspjd Member Posts: 694 Member
    petrogc said:

    Correction
    Thank you so much for your response. After sending the last message about his psa being elevated, we found that his psa had not changed any from a 0 psa to a .10 post lupron shot.

    Is having a psa of .10 mean that the cancer is undetectible or is the lupron shot just a "bandaid" for the actual results in future testing? His gleason score is a 9 and with that score we are concerned about the aggression of the cancer. Do you think that we should feel hopeful that the cancer was removed during radical prostetecomy even though the pathology report says that the margins were very close and the cancer might have spread past the capsule? The other question is now that the lupron shot is at its 6 month duration, when do we think about radiation or another form of treatment before the psa rises back to a 4 like it was prior to prostatectomy?

    Bunch of questions I know.. but seems like we get more informative information from this discussion board than what we do paying hundreds of dollars for an "i dont know" from his urologist.

    Hope
    Petrogc,

    Sorry you and your BF are having to deal with these PCa issues.  Mike and Vasco have given you some good suggestions.  As Vasco has already commented, it's difficult to provide lay opinions without more info re your BF's PCa history. BF will need to obtain a complete copy of his PCa medical records, including obtaining copies of all health records, doctor's mtg notes, test results and pathology reports soonest.  You will need this info to give to the PCa oncologist when you see him/her for a 2nd opinion.   IMHO, there is no need for a urologist to be managing BF's care/case--the uro's job was done after RP follow up.  To quote the excellent advice from Tarhoosier given to another poster recently "He must take himself to the best medical oncologist he can find and afford."
    http://csn.cancer.org/node/247098#comment-1283430

    Re your question "Do you think that we should feel hopeful..." I am the wife of a man dx'd with stage T3 high risk PCa, and the reality is that no one can tell you how you should feel (although some people will try).  

    Here's what I know and try to remember:  in the sage words of Paramahansa Yogananda "You cannot buy peace [or hope], you must know how to manufacture it within."

    I remain hopeful one day at a time that my husband's aggressive PCa txs were successful and curative and that his PCa continues to be in remission (even though I'm very aware of the insidious nature of PCa).  And even though my elderly mother is now in Hospice (not for cancer),  I remain hopeful for her too--hopeful that her passing will be calm and peaceful, without suffering. 

    Good luck to you both for a hopeful PCa journey. 

    mrs pjd
  • VascodaGama
    VascodaGama Member Posts: 3,514 Member
    mrspjd said:

    Hope
    Petrogc,

    Sorry you and your BF are having to deal with these PCa issues.  Mike and Vasco have given you some good suggestions.  As Vasco has already commented, it's difficult to provide lay opinions without more info re your BF's PCa history. BF will need to obtain a complete copy of his PCa medical records, including obtaining copies of all health records, doctor's mtg notes, test results and pathology reports soonest.  You will need this info to give to the PCa oncologist when you see him/her for a 2nd opinion.   IMHO, there is no need for a urologist to be managing BF's care/case--the uro's job was done after RP follow up.  To quote the excellent advice from Tarhoosier given to another poster recently "He must take himself to the best medical oncologist he can find and afford."
    http://csn.cancer.org/node/247098#comment-1283430

    Re your question "Do you think that we should feel hopeful..." I am the wife of a man dx'd with stage T3 high risk PCa, and the reality is that no one can tell you how you should feel (although some people will try).  

    Here's what I know and try to remember:  in the sage words of Paramahansa Yogananda "You cannot buy peace [or hope], you must know how to manufacture it within."

    I remain hopeful one day at a time that my husband's aggressive PCa txs were successful and curative and that his PCa continues to be in remission (even though I'm very aware of the insidious nature of PCa).  And even though my elderly mother is now in Hospice (not for cancer),  I remain hopeful for her too--hopeful that her passing will be calm and peaceful, without suffering. 

    Good luck to you both for a hopeful PCa journey. 

    mrs pjd

    Petrogc; Do things coordinately and timely
    Petrogc

    “Undetectable PSA” is an expression used by doctors to signal that the cancer is in remission or sort of dormant, indolent. Doctors cannot assure that a treatment will lead to cure but that such treatment may provide it. A successful cure can be found if one doesn’t experience recurrence along his journey in life, after ending the therapy.

    In any case, your friend’s last result is low but not in the levels considered by experts as a level of “Remission”. Remission by some doctors is termed to PSA levels lower than 0.06 ng/ml or still lower than 0.03 with some more restrictive doctors (in RP cases).
    Your friend’s test results of 0.10 could in fact be a 0.06, if the assay used by the lab where the test was performed just reads lower limits of 0.10. You can find out about the above by inquiring at the laboratory or your doctor. (What is the Lower Limit of Detection (LLD) of the assays?)

    Ultra sensitive PSA tests/assays with two decimal places (0.XX ng/ml) that got a lower limit of detection of 0.01 or 0.02 should be used as follow up tests in patients that did radical prostatectomies. Without a prostate gland in place any existing serum PSA derives from a small piece of prostatic tissue left behind (inner layer of urethra, etc). Such piece could be cancerous or benign, but a small portion of benign cells are known to produce tiny fractions of serum PSA of about 0.005.

    What the above means is that the prostatic cells producing PSA of a level of 0.10 may be dormant due to its nature or because of the effect of the Lupron shot.

    Gleason 9 patients are at high risk for recurrence (rates of statistics) but everybody have a successful outcome if the doctor manages to remove the whole cancer. The pathologist report after surgery can provide a better understanding of what was found and the real status of your friend.
    You commented above that “the cancer was close to the margins” but do not indicate if there were existing extra-capsular extensions or apparent metastases. It is common in open surgeries to remove the seminal vesicules and a few lymph nodes that would also have been examined by the pathologist.
    You should get a copy of the path report from your doctor and verify if spread is written. You could also check for the results of image studies (MRI, CT, Bone scan, etc) done before surgery. These may have been negative to metastases but levels of PSA inferior to ten (10.0ng/ml) may not be detected by traditional equipments of lower resolution. False negatives are common in cases of low levels of serum PSA or in cases of micrometastases.

    The Lupron shot could be part of the treatment protocol used in a combi of surgery plus hormonal. This is a method preferred by some urologists in high risk patients, but such does not mean that they use it because of apparent metastases. It could be as a preventive measure or fixed protocol.
    If the PSA increases continuously, such may be due to recurrence and doctors may do radiation or use other more efficient HT drugs.

    In any case, it is too early to start thinking in recurrence or salvage treatments. Take the time and enjoy the low level PSA. Be confident and hopeful for a complete recovery from surgery and return to normal living.
    Prepare a file as recommended above and do things coordinately and timely.

    Wishing your friend the best.

    VGama