Pain but undetectable PSA

Momschooling
Momschooling Member Posts: 112 Member
in Prostate Cancer #1

Hi,

My husband (58) was diagnosed with prostate cancer a year ago, gleason 9 (4 +5 with 50 percent of slides) which spread to lymphnodes and bladder neck (negative for bone mets). We actually spent a very long time trying to figure out what was wrong going to several doctors, none suspected prostate cancer because his psa was so low and one dr was 95 percent sure he had bladder cancer. He had been in a lot of pain in his back and side and was having blood in semen and urine. Now fast foward a year, things seem to be going well except he is in pain again and having bleeding over the past month in urine and semen :( He has been on lupron for almost a year now plus zytiga and completed radiation last spring. His psa has been undetectable for many months and yes he has exhaustion and some problems with the hormone therapy, but overall doing pretty well. A month ago he started noticing the bleeding again and the dr said it's probably a side affect from radiation but he is also having a lot of pain near where his prostate is plus a lot of back pain. He just had a CT scan done to see if there is something wrong, overall it looks good and all lymphnodes have shrunk but there was a mention of something with his bones and he will be having a bone scan. Is it even possible that he could have bone mets and pain from the cancer even though his psa is undetectable? I am just freaking out a bit, because I feel like his symptoms are similar to what we went through before his diagnosis. Thank you so much for any input!

 
Scattered nondestructive sclerotic foci in the lumbosacral spine and
pelvic bones.

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    edited December 2020 #2
    Side effects

    Hi Mom,

     

    I looked up Zytiga and one of the side effects is blood in the urine and pelvic pain.  I have included the link below.

    https://www.navigatingcare.com/chemotherapy_drugs/abiraterone

     

    Dave 3+4

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    edited December 2020 #3
    Prostate cancer and PSA levels

    Hi there,

    There is an inverse relationship between Gleason grade, aggressivity and the amount of PSA produced.
    Thus low grade cancers are showers producing a lot of PSA but often being rather benign while higher grade cancers often produce a lot less PSA but often get on with the business of growing and metastasising a lot quicker.
    However almost all prostate cancers do produce some PSA so an undetectable reading is good news.
    Add in the fact that the CT scan has not shown any active growth and it sounds like it is controlled for the moment.
    I know that it is hard but you need strong nerves for this game. I am always telling my wife that I am not cured, I am in remission, the cancer can return, etc. I do not bother telling anyone else anything.

    Best wishes,

    Georges

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited December 2020 #4
    Clevelandguy said:

    Side effects

    Hi Mom,

     

    I looked up Zytiga and one of the side effects is blood in the urine and pelvic pain.  I have included the link below.

    https://www.navigatingcare.com/chemotherapy_drugs/abiraterone

     

    Dave 3+4

    Thank you, it's strange the

    Thank you, it's strange the doctors never mentioned that about Zytiga!. He is having a bone scan and a cystoscopy done, hoping everything turns out okay. I asked if what was seen on the ct scan regarding his bones was most likely benign, but the drs refused to answer that. Just hoping it is all clear!

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited December 2020 #5
    Georges Calvez said:

    Prostate cancer and PSA levels

    Hi there,

    There is an inverse relationship between Gleason grade, aggressivity and the amount of PSA produced.
    Thus low grade cancers are showers producing a lot of PSA but often being rather benign while higher grade cancers often produce a lot less PSA but often get on with the business of growing and metastasising a lot quicker.
    However almost all prostate cancers do produce some PSA so an undetectable reading is good news.
    Add in the fact that the CT scan has not shown any active growth and it sounds like it is controlled for the moment.
    I know that it is hard but you need strong nerves for this game. I am always telling my wife that I am not cured, I am in remission, the cancer can return, etc. I do not bother telling anyone else anything.

    Best wishes,

    Georges

    Thank you so much, I feel a

    Thank you so much, I feel a bit more hopeful now :) I will update when we get results back in few weeks.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited December 2020 #6
    Momschooling said:

    Thank you so much, I feel a

    Thank you so much, I feel a bit more hopeful now :) I will update when we get results back in few weeks.

    Agree

    I agree with all that Georges said, but will stress that his statement regarding 'inverse relationship' is a generality (which he acknowledges).    And as he noted, the negative CT of the nodes strongly suggests that there is not movement into the bone, but the bone scan is quite justified.   Bone involvment is usually an end-stage affair, but not necessarily.  And bone metastasis almost always causes high PSA, usually astronomical in fact.  So again, what you know currently is strongly suggestive of no bone involvement, but only the scan will prove or disprove.     Be aware that HT is commonly successful in controlling even PCa with bone involvement, and often for many, many years .

  • Momschooling
    Momschooling Member Posts: 112 Member
    edited December 2020 #7
    Max Former Hodgkins Stage 3 said:

    Agree

    I agree with all that Georges said, but will stress that his statement regarding 'inverse relationship' is a generality (which he acknowledges).    And as he noted, the negative CT of the nodes strongly suggests that there is not movement into the bone, but the bone scan is quite justified.   Bone involvment is usually an end-stage affair, but not necessarily.  And bone metastasis almost always causes high PSA, usually astronomical in fact.  So again, what you know currently is strongly suggestive of no bone involvement, but only the scan will prove or disprove.     Be aware that HT is commonly successful in controlling even PCa with bone involvement, and often for many, many years .

    This is good news about HT

    This is good news about HT working many years, because we were told it wasn't impossible that it had already spread to the bones last year, but it simply hadn't shown up yet (given the pretty extensive involved in lymphnodes, one was beyond localized area). We figured lets go full force with HT plus radiation given how agressive, hoping this is all just something benign, but prepared either way...

  • Momschooling
    Momschooling Member Posts: 112 Member
    #8
    update

    I just wanted to give an update in case someone else is experiencing something similar. Thank God everything looks good cancer wise. Bone scan was clear and cystoscopy didn't show any problems with the bladder. The prostate itself is kind of an issue and it is bleeding (this is where the blood in the urine is coming from), they believe from enlarged regrowth of the prostate and not from treatment he had. Right now my husband is supposed to just drink a lot of water to prevent any clots, and not over exert himself. If he starts to bleed more and has clots then he should go to the ER. The urologist said the hormones he is on should keep it under control, but if he were to go off them then he would need to take finasteride.

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