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15.5 years post-RRP: To be (concerned) or Not to be

WCavinSC
WCavinSC Member Posts: 6

Morning gents!  RRP with Dr Alan Partin (Johns Hopkins) in August 2005. Post-surgery gleason 3+4, T2c tumor, Margins clear. Unremarkable side effects, save for gradually worsened leaking which was helped with a mesh sling in 2006 and then an AUS device in 2017 (which gave me a decidedly fresh outlook on life!). No issues with erections/sex since 3-4 months post-surgery. PSAs have been undetectable since, and urologist decided in 2018 to only require the PSA test every 2 years moving forward. IMPORTANT NOTE -- PSA was never a good predictor for me anyway. My initial PSA test when PCa was diagnosed in June 2005 was extremely low.... 0.07 (yes.... point zero 7). A hard spot on my prostate during DRE identified possible issue, which was then confirmed by biopsy with multiple positives in both lobes. Age at time of original diagnosis -- 37 (yes, 37).

ER visit this past Thursday for extreme pain in abdomen and some shortness of breath. Chest XRays showed chronic pleural parenchymal scarring that blunts left costophrenic angle, but was not new as of this ER visit (last chest Xray a few years ago). Urine tested positive for blood in urine but everything else with blood tests no issues. CT scan ordered to look for root cause of pain, which was diagnosed as Acute, Uncomplicated Sigmoid Diverticulitis and antibiotics prescribed and starting to work. Here's where the concern comes in....

In addition to the blood in uring, the CT scan also showed 2 sclerotic lesions -- 1 on my 7th rib, 1 on my Left Iliac bone in the pelvis. Additionally, I do have some lower back pain (L5-S1 with severe disc degeneration -- but I'm 53 and 6'6" so I'm not surprised there).  This is where I am concerned. I know that chance of recurrence will always exist, but was hopeful that after almost 16 years of undetectable PSA, no cancer complications, and surgery going so well in 2005, I was out of the woods and "clear". I may still be, and all of this worry from the last 48 hours will be for naught and only due to the infection my body is fighting. I'm also a strong believer in the sovereignty of a mighty and good God, who uses all things good (even when they appear "bad" on the cover). Scripture tells me to not be anxious, and I'm praying and working on that piece.

I have a follow-up with Uro this afternoon, but wondering if anyone here has dealt with anything similar....especially this far removed from original diagnosis and treatment.  Appreciate anyone taking the time to respond!

Comments

  • Georges Calvez
    Georges Calvez Member Posts: 543
    edited March 22 #2
    Don't know

    Hi there,

    I must have read about hundreds of cases when researching my own and I can say that I have never seen one with a starting PSA as low as yours.
    Looking at your low Gleason Score, the lack of PSA and the time elapsed I would have to say that the possibility of recurrence of the prostate cancer would be very low on my list of possible causes.
    See what the urologist has to say.

    Best wishes,

    Georges

  • Old Salt
    Old Salt Member Posts: 834 **
    edited March 22 #3
    Sorry

    to hear about your current issue(s).

    I doubt that the two sclerotic lesions have anything to do with metastatic prostate cancer, but I am not a radiologist. What did he/she say about this finding?

    YOu mentioned that PSA tests haven't been useful in your case. Nevertheless, has there been a trend?

    I hope that your worries will be relieved after your discussion with the urologist.

  • WCavinSC
    WCavinSC Member Posts: 6
    edited March 22 #4
    Old Salt said:

    Sorry

    to hear about your current issue(s).

    I doubt that the two sclerotic lesions have anything to do with metastatic prostate cancer, but I am not a radiologist. What did he/she say about this finding?

    YOu mentioned that PSA tests haven't been useful in your case. Nevertheless, has there been a trend?

    I hope that your worries will be relieved after your discussion with the urologist.

    Appreciate the response...

    Radiology report from ER said this about the lesions -- "small sclerotic focus lesions in the left lateral seventh rib and an additional sclerotic focus in the left iliac bone.  Could consider bone scan to further evaluate as clinically indicated".

    No PSA trend to speak of.  Tests, every year since 2005 post-surgery, have been "undetectable", save for a "scare" a few years ago when 2 registered 0.04 and 0.05 but have been followed by undetectable since.

    Ready to see what is said this afternoon and any next steps.  It's funny to say, and I bet most on here understand the sentiment....but the unknown going into these discussions is far more anxiety-inducing than actual diagnoses.  In my opinion, and experience, knowing allows me to fight a tangible opponent.

    Take care... 

    Wes

  • WCavinSC
    WCavinSC Member Posts: 6
    Update from follow-up....

    Uro has some concern regarding the blood in urine and the 2 lesions (rib and iliac bones), but encouraged me to take a deep breath and not jump to conclusions (while admitting if they were in my shoes, they'd be a little anxious also).  I like a caring, yet honest, physician vs a sterile, no-personality one.  Their biggest caution is that IF the spots are cancerous, they don't appear to be widespread and it would still be very early in the metastatic process.  A re-testing of PSA came out to 0.008 which is still considered undetectable (no surprises there based on history).  To that end, here are the next steps we're proceeding with....

    1) Nuclear Bone Scan -- scheduled for April 5th

    2) Cystoscopy scheduled for June 14th -- this is to help determine where the blood in my urine may be originating.  In my follow-up urinalysis yesterday there was just a microscopic trace (as opposed to a "moderate" finding during the ER visit last Thursday).  It's worth noting that my Dad (surviving 86 yr old; T4 PCa diagnosis in 1991 with 12 weeks of radiation at MD Anderson and ongoing chemo/radiation over last 30 years, despite being told to get affairs in order and a 12-18 month projected remaining life in 1991), has cancerous bladder lesions that are scraped off every 8-12 months, so there is some family history here as well.

    Follow-up scheduled later this week with PCP to look into the shortness of breath and lung findings from xray.

    All in all, I'm much less anxious after the appointment yesterday than I was coming out of the long weekend.  Appreciate all the good thoughts and prayers....and advice/feedback that you all provide.  I'll post an update when I know more.

  • WCavinSC said:

    Update from follow-up....

    Uro has some concern regarding the blood in urine and the 2 lesions (rib and iliac bones), but encouraged me to take a deep breath and not jump to conclusions (while admitting if they were in my shoes, they'd be a little anxious also).  I like a caring, yet honest, physician vs a sterile, no-personality one.  Their biggest caution is that IF the spots are cancerous, they don't appear to be widespread and it would still be very early in the metastatic process.  A re-testing of PSA came out to 0.008 which is still considered undetectable (no surprises there based on history).  To that end, here are the next steps we're proceeding with....

    1) Nuclear Bone Scan -- scheduled for April 5th

    2) Cystoscopy scheduled for June 14th -- this is to help determine where the blood in my urine may be originating.  In my follow-up urinalysis yesterday there was just a microscopic trace (as opposed to a "moderate" finding during the ER visit last Thursday).  It's worth noting that my Dad (surviving 86 yr old; T4 PCa diagnosis in 1991 with 12 weeks of radiation at MD Anderson and ongoing chemo/radiation over last 30 years, despite being told to get affairs in order and a 12-18 month projected remaining life in 1991), has cancerous bladder lesions that are scraped off every 8-12 months, so there is some family history here as well.

    Follow-up scheduled later this week with PCP to look into the shortness of breath and lung findings from xray.

    All in all, I'm much less anxious after the appointment yesterday than I was coming out of the long weekend.  Appreciate all the good thoughts and prayers....and advice/feedback that you all provide.  I'll post an update when I know more.

    View

    WC,

    The liklihood that any of your symptoms are related to PCa are very close to 0 (zero).   I'm even surprised that the docs are doing all of these tests, but an excess of caution is not a bad thng, I suppose.

  • GeorgeG
    GeorgeG Member Posts: 152
    edited March 24 #7
    It's hard to ignore all the possibilities but ...

    It's hard to do but the healiest thing for you is to spend your energy picking good doctors and facilities (like you did with Hopkins, as I did), follow their excellent advice  and try to focus on the best things in your life until another decision has to be made. Then ask questions, get informed and deliberate and decide. Letting PC rob you of joy in your life when there is no confirmed bad news and no decisions have to be made is a real shame.  This gets better with practice, or at least it did for me.

     

    I push out retests and scans, doctor visits and research as far as makes sense to stay vigilant and smart about it but keeps these reminders and clouds away as many days as possible. Then I try to focus on other positive things when I am on these PC "holidays".

     

    Look at Max enjoying his new grandchild in the post above, and he has been through a lot.

     

    George

  • WCavinSC
    WCavinSC Member Posts: 6
    edited March 24 #8
    GeorgeG said:

    It's hard to ignore all the possibilities but ...

    It's hard to do but the healiest thing for you is to spend your energy picking good doctors and facilities (like you did with Hopkins, as I did), follow their excellent advice  and try to focus on the best things in your life until another decision has to be made. Then ask questions, get informed and deliberate and decide. Letting PC rob you of joy in your life when there is no confirmed bad news and no decisions have to be made is a real shame.  This gets better with practice, or at least it did for me.

     

    I push out retests and scans, doctor visits and research as far as makes sense to stay vigilant and smart about it but keeps these reminders and clouds away as many days as possible. Then I try to focus on other positive things when I am on these PC "holidays".

     

    Look at Max enjoying his new grandchild in the post above, and he has been through a lot.

     

    George

    Absolutely agree!

    I get a lot of encouragement from you guys and I look at the Diverticulitis as a blessing....   If not for that, these spots on my bones would continue to be invisible to me, and if they're something to address...no we know.  If they're not, well....we'll know that too.   As I mentioned, my anxiousness is much better, and I'm certainly not letting this rob me of my joy.  Dios le bendiga a todos!

  • GeorgeG
    GeorgeG Member Posts: 152
    edited March 24 #9
    WCavinSC said:

    Absolutely agree!

    I get a lot of encouragement from you guys and I look at the Diverticulitis as a blessing....   If not for that, these spots on my bones would continue to be invisible to me, and if they're something to address...no we know.  If they're not, well....we'll know that too.   As I mentioned, my anxiousness is much better, and I'm certainly not letting this rob me of my joy.  Dios le bendiga a todos!

    Good for you. May we all have

    Good for you. May we all have joy, blessings and good fortune in our lives. 

     

     

    George

     

  • 61psych
    61psych Member Posts: 5
    newbie

    New to this site, and cancer (13 months).  What is RRP?

    Bernard

  • Old Salt
    Old Salt Member Posts: 834 **
    61psych said:

    newbie

    New to this site, and cancer (13 months).  What is RRP?

    Bernard

    RRP

    stands for surgical removal of the prostate 

  • MK1965
    MK1965 Member Posts: 220
    edited April 19 #12
    Old Salt said:

    RRP

    stands for surgical removal of the prostate 

    RRP

    I think it stands for retro pubic radical prostatectomy.

    MK