prostate cancer metastasized to bone -- low PSA and no pain

Reneegs
Reneegs Member Posts: 9
in Prostate Cancer #1
My husband was initially diagnosed with PCa in 1999 with a PSA of 6.7 and a Gleason score of 5.He had seed implant in June 1999. A couple of years ago, PSA started to rise slowly. He was aggressive in monitoring his results and he had a bone scan, MRI, Xray and CT. The last PSA is still low (1.92 up from 1.68 6 monts earlier). All imagery confirmed 3 blastic leasions on his pelvis (one at 3 cm, a second at 1 cm, and a smaller 3rd one). We met with the medical oncologist yesterday who is eager to start him on ADT (Lupron with Casadex). My husband has no symptoms, no pain. He is 75 with a familial history of prostate cancer (father, uncle, brother) Key questions:
(1) At what point does metastatic prostate cancer cause pain?
(2) What are the benefits and risks of immediate vs deferred hormone therapy.
(3) My husband is a jazz musician and is concerned about possible ADT side effects on his cognitive skills and rapid reaction times (both critical to a jazz musician)
(4) if there are a small number of discrete lesions visible, does that mean that there are more that are not yet visible?
(5) What does the low PSA score mean in the presence of highly probably advanced cancer?

I'm sure there will be many more questions, but any insights you can share or any research you can point us to would be greatly appreciated.

Renee

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    #2
    Welcome Renne
    Renne,

    So sorry that you and your husband are dealing with metastatic prostate cancer. I'll try to answer your questions from my background and studies and I am sure others will offer their insights as well.

    #1. It depends. In early stages of metastasis there will probably be little pain at all. As the prostate cancer continues to grow it is eroding the bone tissue and eventually it will probably cause some pain in the pelvic bone, hips, lower spine, and thighs. This type of pain is usually described as dull aching or even stabbing with unusual movement. There is also pain that is caused by metastatic spinal cord compression where the growing tumor presses against the spinal cord and can be quite painful. Pain can be felt with through radiation and drugs.

    #2. From what I have read, most doctors believe that early start of hormone therapy is important to curb the growth of cancer. If you look at it from a mathematical sense, it shouldn't seem to matter whether you start it early or late but the reports I have read indicate that early is big factor in prolonging survival times. You may also with to consider radiating the lesions that can be seen by imagery while starting the HT therapy. The doubling time for most adenocarcinoma is about 487 days so you want to be on a HT regimen that covers that span to ensure that those cancer cells that will die without testosterone are covered.

    #3. I have never taken any ADT drugs but I understand that it often affects different men differently. Some experience severe side effects while others have few side effects. Bottom line is that it MIGHT affect his cognitive skills and debating the pros and cons of treatment versus quality of life is one of the tough things we all have to go through as we deal with this disease. I don't think there are any easy answers here.

    $4. I think the answer here is "probably." Prostate cancer tends to spread to lots of areas at different times. Eventually, these small, microscopic lesions grow into detectable tumors that can be identified with imaging devices.

    #5. As PSA gets more advanced it becomes very poorly differentiated and ceases to look and behave like normal prostate cancer cells. As these cells become more primitive, the tend to produce less and less PSA. They also tend to grow faster and multiply more frequently.

    Hope this helps. I think your oncologist is giving you good advice. I would also talk to a radiologist that specializes in prostate cancer and discuss the advantages and disadvantages of radiating those lesions that can be identified before they get larger.

    Best to you and your husband,

    K
  • rch
    rch Member Posts: 79
    #3
    Hi Reneegs
    Sorry to hear
    Hi Reneegs
    Sorry to hear that your husband has blastic lesions despite relatively low PSAs. I'm a bit bewildered however that a low risk localized CaP ( PSA<10, DS 5)treated appropriately in 1999 with Brachy suddenly presenting itself as blastic lesions 12 yrs later without any appreciable rise in PSA ,but as explained by Kongo, it might be a poorly differentiated variant. Just aside, has the Medical Oncologist ruled out another primary? You mentioned CT. Did that include the chest ?
  • Reneegs
    Reneegs Member Posts: 9
    #4
    rch said:

    Hi Reneegs
    Sorry to hear
    Hi Reneegs
    Sorry to hear that your husband has blastic lesions despite relatively low PSAs. I'm a bit bewildered however that a low risk localized CaP ( PSA<10, DS 5)treated appropriately in 1999 with Brachy suddenly presenting itself as blastic lesions 12 yrs later without any appreciable rise in PSA ,but as explained by Kongo, it might be a poorly differentiated variant. Just aside, has the Medical Oncologist ruled out another primary? You mentioned CT. Did that include the chest ?</p>

    Thanks Rch,
    The CT did
    Thanks Rch,
    The CT did include the chest, primarily to look for soft tissue involvement. No swelling on lymph nodes.

    The urologist was also surprised by the low PSA score which was the apparent reason for his reluctance to pursue. However, the velocity was doubling yearly which was the trigger that got my husband's attention.

    Renee
  • Reneegs
    Reneegs Member Posts: 9
    #5
    Kongo said:

    Welcome Renne
    Renne,

    So sorry that you and your husband are dealing with metastatic prostate cancer. I'll try to answer your questions from my background and studies and I am sure others will offer their insights as well.

    #1. It depends. In early stages of metastasis there will probably be little pain at all. As the prostate cancer continues to grow it is eroding the bone tissue and eventually it will probably cause some pain in the pelvic bone, hips, lower spine, and thighs. This type of pain is usually described as dull aching or even stabbing with unusual movement. There is also pain that is caused by metastatic spinal cord compression where the growing tumor presses against the spinal cord and can be quite painful. Pain can be felt with through radiation and drugs.

    #2. From what I have read, most doctors believe that early start of hormone therapy is important to curb the growth of cancer. If you look at it from a mathematical sense, it shouldn't seem to matter whether you start it early or late but the reports I have read indicate that early is big factor in prolonging survival times. You may also with to consider radiating the lesions that can be seen by imagery while starting the HT therapy. The doubling time for most adenocarcinoma is about 487 days so you want to be on a HT regimen that covers that span to ensure that those cancer cells that will die without testosterone are covered.

    #3. I have never taken any ADT drugs but I understand that it often affects different men differently. Some experience severe side effects while others have few side effects. Bottom line is that it MIGHT affect his cognitive skills and debating the pros and cons of treatment versus quality of life is one of the tough things we all have to go through as we deal with this disease. I don't think there are any easy answers here.

    $4. I think the answer here is "probably." Prostate cancer tends to spread to lots of areas at different times. Eventually, these small, microscopic lesions grow into detectable tumors that can be identified with imaging devices.

    #5. As PSA gets more advanced it becomes very poorly differentiated and ceases to look and behave like normal prostate cancer cells. As these cells become more primitive, the tend to produce less and less PSA. They also tend to grow faster and multiply more frequently.

    Hope this helps. I think your oncologist is giving you good advice. I would also talk to a radiologist that specializes in prostate cancer and discuss the advantages and disadvantages of radiating those lesions that can be identified before they get larger.

    Best to you and your husband,

    K

    Thanks Kongo,
    You've given
    Thanks Kongo,

    You've given us a lot of good information and further avenues to pursue. We will follow up on the suggestion for a consult with the radiation oncologist. Of interest, he was the one who earlier had requested the bone scan. He also raised the option of deferred hormone treatment until symptoms appear.

    My husband is definitely interested in pursuing an intermittent course of HT, primarily because of qual of life issues. Does intermittent HT slow down the rate at which the PCa becomes refractory? I've read some studies but haven't come across that piece of information yet.

    Your comment about primitive cells is very interesting. I've run across some studies in which very low PSA scores were associated with mets. These were particularly virulent, but that may be because they were not caught sufficiently early and were also in very advanced stages.

    lots to learn and iortant decisions to make in a short time...
  • Reneegs
    Reneegs Member Posts: 9
    #6
    Update
    Yesterday my husband spoke with his older brother. Turns out that their dad had prostate cancer with bone mets and died from that at age 87. he did have pain but only towards the end. I'm assuming that it was not caught early but we don't know what, if any, treatment he had. In any case, the long life and late onset of pain are encouraging bits of news. Sounds to me like it's not a virulent type. Am I grasping at straws?
  • Kongo
    Kongo Member Posts: 1,166 Member
    #7
    Reneegs said:

    Update
    Yesterday my husband spoke with his older brother. Turns out that their dad had prostate cancer with bone mets and died from that at age 87. he did have pain but only towards the end. I'm assuming that it was not caught early but we don't know what, if any, treatment he had. In any case, the long life and late onset of pain are encouraging bits of news. Sounds to me like it's not a virulent type. Am I grasping at straws?

    Straws
    Renee, I don't think you are grasping at straws at all. The overwhelming majority of these prostate cancers are indeed very slow growing and most men will not die from it. You have already been dealing with this cancer for a long, long time which is a strong indication that it is the slow growing type. I think hormone treatment will further curb the growth. You may also wish to consider some dietary changes that avoid red meat and especially dairy.

    K
  • Reneegs
    Reneegs Member Posts: 9
    #8
    Kongo said:

    Straws
    Renee, I don't think you are grasping at straws at all. The overwhelming majority of these prostate cancers are indeed very slow growing and most men will not die from it. You have already been dealing with this cancer for a long, long time which is a strong indication that it is the slow growing type. I think hormone treatment will further curb the growth. You may also wish to consider some dietary changes that avoid red meat and especially dairy.

    K

    Dietary changes
    Where can I find information about these dietary changes you mention? We eat little red meat (maybe once a month)and can easily change from dairy milk to soy or almond varieties. Giving up good cheese may be a bit more of a challenge?

    Thanks for your advice. We're embarking on the second step of this journey with little in the way of a guidebook so insight from folks like you and others on this site is a godsend.
  • Kongo
    Kongo Member Posts: 1,166 Member
    #9
    Reneegs said:

    Dietary changes
    Where can I find information about these dietary changes you mention? We eat little red meat (maybe once a month)and can easily change from dairy milk to soy or almond varieties. Giving up good cheese may be a bit more of a challenge?

    Thanks for your advice. We're embarking on the second step of this journey with little in the way of a guidebook so insight from folks like you and others on this site is a godsend.

    Diet
    I recommend you get a couple of books. The first is The China Study by Dr. T. Colin Campbell and the second is Prostate Cancer by Professor Jane Plant. If you scroll back through several pages of posts in this forum there are some great threads on diet.

    K
  • LPV
    LPV Member Posts: 1
    #10
    Prostate Cancer Metastasized to Bone
    Renee

    I have been in the health insurance industry since 1989, and have been monitoring the FDA and all it entails for a long time, especially with regard to cancer. There was a very well-known golf pro in our area who was diagnosed this time last year with prostate cancer metastasized to bone. He had many of the same questions you are asking. There are two books I highly recommend: Book 1: Outsmart Your Cancer by Tonya Harter Pierce - Especially Chapter 20 - What Men Must Know About Prostate Cancer, the PSA and Hormone-Blocking Drugs. Book 2: Hormone Balance for Men by John R. Lee, M.D.

    LPV
  • Reneegs
    Reneegs Member Posts: 9
    #11
    LPV said:

    Prostate Cancer Metastasized to Bone
    Renee

    I have been in the health insurance industry since 1989, and have been monitoring the FDA and all it entails for a long time, especially with regard to cancer. There was a very well-known golf pro in our area who was diagnosed this time last year with prostate cancer metastasized to bone. He had many of the same questions you are asking. There are two books I highly recommend: Book 1: Outsmart Your Cancer by Tonya Harter Pierce - Especially Chapter 20 - What Men Must Know About Prostate Cancer, the PSA and Hormone-Blocking Drugs. Book 2: Hormone Balance for Men by John R. Lee, M.D.

    LPV

    Thanks LPV
    There's a growing library of well recommended books. Many thanks
  • Reneegs
    Reneegs Member Posts: 9
    #12
    LPV said:

    Prostate Cancer Metastasized to Bone
    Renee

    I have been in the health insurance industry since 1989, and have been monitoring the FDA and all it entails for a long time, especially with regard to cancer. There was a very well-known golf pro in our area who was diagnosed this time last year with prostate cancer metastasized to bone. He had many of the same questions you are asking. There are two books I highly recommend: Book 1: Outsmart Your Cancer by Tonya Harter Pierce - Especially Chapter 20 - What Men Must Know About Prostate Cancer, the PSA and Hormone-Blocking Drugs. Book 2: Hormone Balance for Men by John R. Lee, M.D.

    LPV

    Thanks LPV
    There's a growing library of well recommended books. Many thanks
  • Reneegs
    Reneegs Member Posts: 9
    #13
    LPV said:

    Prostate Cancer Metastasized to Bone
    Renee

    I have been in the health insurance industry since 1989, and have been monitoring the FDA and all it entails for a long time, especially with regard to cancer. There was a very well-known golf pro in our area who was diagnosed this time last year with prostate cancer metastasized to bone. He had many of the same questions you are asking. There are two books I highly recommend: Book 1: Outsmart Your Cancer by Tonya Harter Pierce - Especially Chapter 20 - What Men Must Know About Prostate Cancer, the PSA and Hormone-Blocking Drugs. Book 2: Hormone Balance for Men by John R. Lee, M.D.

    LPV

    Thanks LPV
    There's a growing library of well recommended books. Many thanks

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