psa recurrence after surgery and radiation

mark57
mark57 Member Posts: 2
In 2002 I was diagnosed with prostate cancer, I removed my prostate early 2003 and my PSA droped to 0. In 2006 my PSA started to raise, I then sat for radiation therapy. My PSA started to drop but never to 0. Last year my PSA started to raise, it is currently at 0.48, doctors are saying they cannot do nothing due to the fact that they do not know where the cancer is, they said that the only thing they can do is wait until the cancer hits the bones and then go for hormone therapy. Hormone therapy is just a treatment that buys me 2-3 years, and I will live a miserable life so I am choosing not do it. Is there any thing else I can do?

Thanks

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    The cancer should be tackled before it gets to the bone
    Mark57

    The first thing you should do is to get educated about your disease, status and remedies. Your doctor’s comment is erroneous and I would recommend you to get a second opinion from another oncologist.
    The cancer should be tackled before it gets to the bone (becomes systemic), and hormone therapy does NOT “buy you 2-3 years” only, but much longer a period of time. There are patients that have chosen hormone therapy as theirs only prime treatment and they have managed periods longer than 10 years on traditional HT before starting a second line of hormone treatment. HT will eventually stop doing its beneficial effects once the cancer becomes refractory to hormone dependency.

    The info you post on just one PSA test is not sufficient to verify recurrence after salvage RT. NCCN norms in cases similar to yours indicates that recurrence is declared on the third consecutive rise from nadir PSA. An aggressive case post RT is considered on a PSADT doubling time of lower than 9-months.

    I would recommend you to search in the net about “Recurrence after SRT” and on HT.
    Here is a thread in this forum discussing about HT; (http://csn.cancer.org/node/213002)
    I would recommend you also the book “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases. This oncologist is himself a survivor of a challenging PCa case since 1999.

    Can you share info on your PSA history, Gleason grade and symptoms (side effects) you have experienced?

    Welcome to the board.
    VGama
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    Can/will/should
    Mark:
    Sorry for your appearance here. Hope we can be of some assistance.
    What your doctor should have said is that there are several things that he CAN do. He just does not choose to do them. It is true that with current imaging techniques any recurrence is unlikely to be visualized by a scan. Even if it were it may not be accessible due to location and perhaps because of prior radiation in that body field. You do not indicate if the radiation you underwent was to lymph nodes distant from the pelvis, or even any nodes at all, regardless of location.
    The old chestnut of "2-3 years" was true for men diagnosed with widespread metastases as was more common 20+ years ago. It is certainly not the truth for any other stage of our disease. Depending on the G score, ploidy (if identified), and other pathologic factors from your prostate surgery, you should have many, many years with the treatments we have today and with more treatments on the way that will extend further. Your psa rise is apparently small (0.x-0.48) and you may have some time before making any hormone treatment decision.
    You do not mention your psa doubling time, the time it takes for your psa to double the previous value. This is an important consideration in the timing of hormone treatment.
    Without trying to add fear or guilt to the situation I strongly believe that the very best step you can make is to find a medical oncologist, preferably one with experience with prostate cancer, and seek his/her advice. Your current doctor(s) are not working with contemporary treatment approaches. They are certainly not addressing the value of hope, and current and future quality of life.
    I agree with Vasco that education is an important empowering tool. You have started that process and I encourage you to continue on that path.
  • mark57
    mark57 Member Posts: 2

    Can/will/should
    Mark:
    Sorry for your appearance here. Hope we can be of some assistance.
    What your doctor should have said is that there are several things that he CAN do. He just does not choose to do them. It is true that with current imaging techniques any recurrence is unlikely to be visualized by a scan. Even if it were it may not be accessible due to location and perhaps because of prior radiation in that body field. You do not indicate if the radiation you underwent was to lymph nodes distant from the pelvis, or even any nodes at all, regardless of location.
    The old chestnut of "2-3 years" was true for men diagnosed with widespread metastases as was more common 20+ years ago. It is certainly not the truth for any other stage of our disease. Depending on the G score, ploidy (if identified), and other pathologic factors from your prostate surgery, you should have many, many years with the treatments we have today and with more treatments on the way that will extend further. Your psa rise is apparently small (0.x-0.48) and you may have some time before making any hormone treatment decision.
    You do not mention your psa doubling time, the time it takes for your psa to double the previous value. This is an important consideration in the timing of hormone treatment.
    Without trying to add fear or guilt to the situation I strongly believe that the very best step you can make is to find a medical oncologist, preferably one with experience with prostate cancer, and seek his/her advice. Your current doctor(s) are not working with contemporary treatment approaches. They are certainly not addressing the value of hope, and current and future quality of life.
    I agree with Vasco that education is an important empowering tool. You have started that process and I encourage you to continue on that path.

    I have spoke to two
    I have spoke to two oncologist at Johns Hopkins, one was hopping for a false rise; that PSA will stop and go down, I took a second opinion, from another oncologist at Hopkins, and he gave me until 2015 due to the fact that I will not do HT. Do you recommend anything else; see someone else at another hospital.
  • janekirstine
    janekirstine Member Posts: 24 Member
    Rising PSA after SRT
    I'm Tim, JaneKirstine's husband. I had RP in 2001 and was less that .1 PSA for nine years. Last October it showed up again at .52. My urologist found a mass which proved to be cancerous so they zapped it with IRMT. 38 sessions that ended in mid-April. I was advised to wait for three months before having a follow up PSA. I just got the results back. My PSA is 1.72!! I know there is such a thing as a post radiation bounce but this seems ridiculous. Has anyone seen/heard of similar cases? Tim
  • Old-timer
    Old-timer Member Posts: 196

    Rising PSA after SRT
    I'm Tim, JaneKirstine's husband. I had RP in 2001 and was less that .1 PSA for nine years. Last October it showed up again at .52. My urologist found a mass which proved to be cancerous so they zapped it with IRMT. 38 sessions that ended in mid-April. I was advised to wait for three months before having a follow up PSA. I just got the results back. My PSA is 1.72!! I know there is such a thing as a post radiation bounce but this seems ridiculous. Has anyone seen/heard of similar cases? Tim

    My experience is much like yours
    I had RP in 1991. PSA dropped to less to .1 for 13 years. PSA then began a slow climb and reached 1.16 in less than two years. I then had 36 sessions of radiation. PSA was checked after three months and was 1.2. Radiation was unsuccessful. My uro said we would begin hormone therapy when it reached 10.0. After studying and learning as much as possible, I talked my uro into waiting until it reached 20.0. That took three and one half years. I then reluctantly agreed to go along with that idea. The doc said he would drop me as a patient if I didn't! I had a lot of confidence and respect for his judgement. I have been on hormone therapy for three years. The cancer is in remission. The doc says that something else will get me before the cancer does. We'll see what happens. Bye the way, I will turn 85 in August. Except for the PC, I seem to be in good physical condition considering my age. PC is a nasty thing to deal with mentally, and physically as well. But in a strange sense, I feel that having it has enriched my life. When I was first diagnosed with it 20 years ago, it hit me like a rock. After the radiation failed, seven years ago, I assumed that the end was nearing. Now I feel that I will be around for another five years or more.

    I have rambled more than I should. My bride of 62 years is inviting me to bed!

    You and Mark57 have my good wishes.
  • 2ndBase
    2ndBase Member Posts: 220
    Treatment
    Mark,

    I was diagnosed at age 52 with psa of 24 and Gleason of 9. Given a 50% chance to survive 2 years. I am now 60 years old.

    My entire treatment was one hormone shot to shrink the prostate and 40 some radiation treatments. I would not have taken the hormone shot at all except to help with the radiation.

    You are far to stressed for the problem you face and should enjoy life. You have little information to go on and there is no point in worrying about what you have no control of. Relax you are going to be fine.

    My cancer had already spread before it was diagnosed and I have many tumors throughout my body. In hospice care, but doing well. Still work every day and garden and play golf.
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    2ndBase said:

    Treatment
    Mark,

    I was diagnosed at age 52 with psa of 24 and Gleason of 9. Given a 50% chance to survive 2 years. I am now 60 years old.

    My entire treatment was one hormone shot to shrink the prostate and 40 some radiation treatments. I would not have taken the hormone shot at all except to help with the radiation.

    You are far to stressed for the problem you face and should enjoy life. You have little information to go on and there is no point in worrying about what you have no control of. Relax you are going to be fine.

    My cancer had already spread before it was diagnosed and I have many tumors throughout my body. In hospice care, but doing well. Still work every day and garden and play golf.

    Mark and Tim; re-check the PSA values
    Mark57
    Without info on your other PSA test chronology you cannot expect a secured answer in this board or from any other oncologist.
    I would recommend you to create a data base with two additional PSA tests done one month apart of each other. This will confirm recurrence, if any.
    You could start from there for any decision on future treatment. Meanwhile you could read about your problem as I suggested above.

    Tim,
    Bounce PSA exists and the level can be quite high. However, in your case without a prostate gland in place, the PSA is not common to triple from a low of 0.52.
    You could verify your past PSA chronology before the value of 0.52 and redone the PSA test in a reliable laboratory. Error could be the case too.

    Wishing you both peace of mind.
    VGama
  • Kongo
    Kongo Member Posts: 1,166 Member
    Good Advice
    Mark,

    I think you've had some excellent advice from several posters. One question that comes to mind after reading your posts is that you have apparently rejected the HT option which is pretty much standard protocol for your situation. Could you elaborate on why you chose not to pursue this course of treatment? Your supposition that it only buys you 2-3 years and comes with a "miserable" life seems counter to everything I've read or heard. Certainly there are potential side effects but all the treatments we choose have ill effects hiding in the closet.

    I doubt that this is a "false" PSA rise as one oncologist suggested to you. Prostate cancer is metastatic by nature. It tends to spread faster once it escapes the confines of the prostate gland. Recurrence after RP is not uncommon and once it starts spreading, the salvage radiation therapy often fails to get those cells that have moved beyond the prostate bed and lymph nodes. HT will slow the growth of those cells in areas of your body where its presence is too small at present to be detected by conventional imaging technology.

    I would also encourage you to investigate the effect of diet on prostate cancer growth, particularly with respect to dairy and red meat.

    Best of luck to you.

    K
  • mrspjd
    mrspjd Member Posts: 694 Member

    Rising PSA after SRT
    I'm Tim, JaneKirstine's husband. I had RP in 2001 and was less that .1 PSA for nine years. Last October it showed up again at .52. My urologist found a mass which proved to be cancerous so they zapped it with IRMT. 38 sessions that ended in mid-April. I was advised to wait for three months before having a follow up PSA. I just got the results back. My PSA is 1.72!! I know there is such a thing as a post radiation bounce but this seems ridiculous. Has anyone seen/heard of similar cases? Tim

    infection?
    While it may seem counter-intuitive, I recall reading somewhere that an infection, even w/o prostate (as in RP), can be a factor in PSA rise. Has infection been ruled out?
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    JHU
    Mark, the Hopkins protocol is to avoid hormone treatment until bone metastases occur or are imminent. Asking another doctor (oncologist? urologist) at that same institution provided a duplicate answer. You need an INDEPENDENT opinion.
    They certainly CAN do more. They are choosing to do less and later. Sorry to be direct. IF they are telling you that a man at your stage will respond for 2-3 years they are spreading mis-information. I have been on hormone treatment for six years and lead a productive, satisfied life. I have no interest in allowing this disease to advance without question. My oncologist fully supports this and plans to provide me with years more of life. If you come here looking for other opinions we can provide them. If you are looking for a site that is made of men waiting for psa to spread and metastases to develop, I have no idea where that site would be, except one supported by Hopkins.
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    JHU
    Mark, the Hopkins protocol is to avoid hormone treatment until bone metastases occur or are imminent. Asking another doctor (oncologist? urologist) at that same institution provided a duplicate answer. You need an INDEPENDENT opinion.
    They certainly CAN do more. They are choosing to do less and later. Sorry to be direct. IF they are telling you that a man at your stage will respond for 2-3 years they are spreading mis-information. I have been on hormone treatment for six years and lead a productive, satisfied life. I have no interest in allowing this disease to advance without question. My oncologist fully supports this and plans to provide me with years more of life. If you come here looking for other opinions we can provide them. If you are looking for a site that is made of men waiting for psa to spread and metastases to develop, I have no idea where that site would be, except one supported by Hopkins.

    Nuclearduck (Tim &Jane) Let’s cross our fingers
    Tim

    Your case is curious. According to your earlier report (http://csn.cancer.org/node/209285), you are looking for recurrence after irradiation of a cancerous mass found in the prostate bed, and confirmed by biopsy.
    I wonder what Gleason grade (aggressivity) is your cancer and the planned total dosage (Grays) in the 38 sessions (IMRT of a linear 6 MeV). I believe your radiologist have included irradiation of the whole pelvic area together with the “mass”.
    Part of the rise in PSA could well be from other causes as MrsPJD comments above. The next tests will clear any doughty error in the laboratory and give you an idea of your status. However, 4, 5, 6 months period is too short to draw conclusions. The PSA after radiation is typical of being erratic (even without the gland in place) and that makes many doctors in recommending the first test to be taken 6-months after ending the treatment.

    Radiation causes inflammation and infection. Your symptoms (side effects) could also give you an idea of what is happening. Are you experiencing any?

    I hope SRT has made you cancer free and that PSA numbers return to your past experiences in the Zeros.

    VGama
  • nuclearduck
    nuclearduck Member Posts: 9

    Mark and Tim; re-check the PSA values
    Mark57
    Without info on your other PSA test chronology you cannot expect a secured answer in this board or from any other oncologist.
    I would recommend you to create a data base with two additional PSA tests done one month apart of each other. This will confirm recurrence, if any.
    You could start from there for any decision on future treatment. Meanwhile you could read about your problem as I suggested above.

    Tim,
    Bounce PSA exists and the level can be quite high. However, in your case without a prostate gland in place, the PSA is not common to triple from a low of 0.52.
    You could verify your past PSA chronology before the value of 0.52 and redone the PSA test in a reliable laboratory. Error could be the case too.

    Wishing you both peace of mind.
    VGama

    Thanks for the advice
    VascodaGama,
    Thanks for the advice. Janekirstine, my wife, convinced me to get my own login. I checked with my Oncologist about the increased PSA. He wants to get a couple more readings spaced about a month apart so we can get a level of rise. He says that there may be a chance of error by the lab but not to count on it.
  • nuclearduck
    nuclearduck Member Posts: 9

    Nuclearduck (Tim &Jane) Let’s cross our fingers
    Tim

    Your case is curious. According to your earlier report (http://csn.cancer.org/node/209285), you are looking for recurrence after irradiation of a cancerous mass found in the prostate bed, and confirmed by biopsy.
    I wonder what Gleason grade (aggressivity) is your cancer and the planned total dosage (Grays) in the 38 sessions (IMRT of a linear 6 MeV). I believe your radiologist have included irradiation of the whole pelvic area together with the “mass”.
    Part of the rise in PSA could well be from other causes as MrsPJD comments above. The next tests will clear any doughty error in the laboratory and give you an idea of your status. However, 4, 5, 6 months period is too short to draw conclusions. The PSA after radiation is typical of being erratic (even without the gland in place) and that makes many doctors in recommending the first test to be taken 6-months after ending the treatment.

    Radiation causes inflammation and infection. Your symptoms (side effects) could also give you an idea of what is happening. Are you experiencing any?

    I hope SRT has made you cancer free and that PSA numbers return to your past experiences in the Zeros.

    VGama

    VascodaGama good information
    Thanks for that information about the PSA uncertainty after radiation. I think that's what my Oncologist wants to see by monitoring for a couple of months. Sorry I don't monitor the site that often but I have one more week of work to go before retirement. Jane works at keeping me informed. Thanks for the help.
    Nuclearduck
  • GeneRose1
    GeneRose1 Member Posts: 64
    My Prostate Cancer is Back!

    What a mess! My prostate was surgically removed in April 2014. A few months later, my PSA started going up so I began radiation treatment and hormone-blocking therepy. I completed all that in March 2015. Last month, my PSA was .83. This month it's 1.63. A retest, less than a week later, showed that it had increased to 1.82! My Oncologist is handing me back to my Urologist for further treatment. I want to be as smart as I can this time because everything that Urologist has done has had fairly devastating consequences. The surgery left me with ED & severely incontinent. To this day, I go through four to five Depends undergarments a day and seldom sleep more than two hours at a time because I have to get up and go to the bathroom. I guess I'm getting used to it but it's still not the best way to live. The hormone-blocking therapy lead to Type 2 Diabetes. Nobody in my family has had diabetes and this conditon was not on mine or my Primary Care Manager's radar before I started the injections. Within two or three months after completing the therapy, I was a diabetic. My Oncologist tells me to not worry because they've got plenty of tools available to fight this latest recurrance. I'd like to know in advance what those tools are so I can research the risks and possible side effects and possibly go elsewhere for treatment. I just don't think me and that Urologist are on the same page. He's very proud of the number of surgeries he's done and, yes, he did take out my prostate and, no, I didn't die on the operating table, but I just don't think he is seeing the bigger picture as to the long-term consequences of his actions. What can I expect? Thanks everybody!

  • Old Salt
    Old Salt Member Posts: 1,284 Member
    Please

    Go see an oncologist ASAP, not a urologist!

  • Josephg
    Josephg Member Posts: 372 Member
    See an Oncologist

    I agree with Old Salt.

    An Oncologist, specializing in Prostate Cancer, should be leading the treatment protocol for you at this time.  If your current Oncologist is handing you back to your Urologist, then I strongly recommend that you find another Oncologist.

    I too, had my prostate removed, my PSA rose shortly thereafter, and then I underwent hormone and radiation therapy.

    From the date that my original biopsy results were received and analyzed, my Oncologist has been managing my treatment protocol.

    I wish you the best of outcomes in your continuing journey.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited August 2016 #18
    Indeed

    Gene,

    I thought I had written you yesterday, but the post is not here. I may not have hit the send button.

    At that time I wrote that both your oncologist and urologist seem "not the best."   Like the other guys wrote, you need to get to a good medical oncologist with specific prostate expertise.  I would go do at least a consult with a different medical oncologist, and share how you have been treated thus far.

    Your post-surgical care has been a train wreck. It is very possible that you were not a good surgical candidate to begin with -- I mean it appears in retrospect that with your particualrs, radiation instead should have been recommended.

    A new doctor, or set of doctors, is apparantly highly advisable in your case.

    max

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Indeed

    Gene,

    I thought I had written you yesterday, but the post is not here. I may not have hit the send button.

    At that time I wrote that both your oncologist and urologist seem "not the best."   Like the other guys wrote, you need to get to a good medical oncologist with specific prostate expertise.  I would go do at least a consult with a different medical oncologist, and share how you have been treated thus far.

    Your post-surgical care has been a train wreck. It is very possible that you were not a good surgical candidate to begin with -- I mean it appears in retrospect that with your particualrs, radiation instead should have been recommended.

    A new doctor, or set of doctors, is apparantly highly advisable in your case.

    max

    max

    Gene Rose started a new thread, which you posted to ............best to discontinue posting to this thread and continue with the new thread

  • Jacquet
    Jacquet Member Posts: 29
    edited September 2016 #20
    Mark 57,

    Mark 57,

    All, it's been a good while since I posted. I had radiation therapy and HT treatment almost 4 years ago and my PSA is still neglible. The only problem I had with HT was the occasional hot flash burning. I'd sweat for a few minutes and then be good, maybe twice a day. It was definately worth it.