Checkup Status - Post-Radiation / Existing Hormone - 8/5/2021

Josephg
Josephg Member Posts: 443 Member
edited August 2021 in Prostate Cancer #1

Hi Folks,

 

I just received my PSA test result, and I wanted to share it with you.

The timing of this test is approximately 36 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 36 months after my last radiation treatment (38 visits, 68 Greys). 

The result for PSA was 0.05, the first detectible reading after 30 months of non-detectible readings.  I also have a new Oncologist at the same Institution, as my original Oncologist left to pursure a pure research career.  My new Oncologist, who has 20+ years in her role, stated that she is not concerned about my latest PSA reading.  However, now that I am over my initial surprise, I will be having a follow-up conversation with her to discuss this latest result in greater detail. 

While I recognize that I have only traveled only 6 more months down this long road, this is the first speed bump that I've encountered after my salvage treatment.  Perhaps, it is a message from the bandit currently holed up in some remote part of my body, hiding, but growing impatient. 

I do recognize that a PSA reading of 0.05 is really low, and I've been more fortunate to date, than a lot of my brothers in this forum with PCa. 

My next PSA test and Oncologist visit is scheduled for 6 months from now.

 

Related History and Data:

  

Post-Robotic Prostate Removal Surgery Pathology Report 

A.  Lymph nodes, right pelvic:  Two (2) lymph nodes; negative for metastasis.

B.  Lymph nodes, left pelvic:  Two (2) lymph nodes; negative for metastasis.

C.  Prostate, radical resection:

   1.  Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.

   2.  No lymphatic/vascular invasion is present.

   3.  Perineural invasion is present.

   4.  Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).

   5.  The Seminal vesicles are free of carcinoma.

   6.  The inked margins are free of carcinoma.

   7.  High-grade PIN is present.

   8.  Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.

D.  Left mid margin:  Fibrovascular tissue; negative for tumor.

Diagnosis Comment:  AJCC:  pT3a NO

 

Robotic Prostate Removal Surgery

11/21/2011

 

AUS 800 Artificial Sphincter Implant Surgery

1/9/2013

 

Hormone Therapy (Lupron tri-monthly and Casodex daily)

Started 5/4/2013

Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)

 

Radiation Therapy (38 visits, 68 Grays)

Started 6/4/2013

Stopped 8/9/2013

 

PSA History

5.22 - 6/28/2011 (59 years old)

0.05 - 12/22/2011

0.05 - 3/25/2012

0.05 - 6/22/2012

0.06 - 10/13/2012

0.08 - 12/31/2012

0.11 - 3/30/2013

0.13 - 4/23/2013

0.02 - 8/6/2013

0.02 - 11/26/2013

<0.015 - 7/28/2014

<0.015 - 1/3/2015

<0.015 - 7/7/2015

0.02 - 1/15/2016

0.05 - 8/23/2016

 

Related Permanent Side Effects

Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)

ED - Prostate removal surgery (had to remove the left side nerve bundle)

Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex

 

Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):

Artificial Sphincter Experiences

http://csn.cancer.org/comment/1324584#comment-1324584

http://csn.cancer.org/comment/1326323#comment-1326323

http://csn.cancer.org/comment/1339326#comment-1339326

http://csn.cancer.org/comment/1339561#comment-1339561

http://csn.cancer.org/comment/1344785#comment-1344785

http://csn.cancer.org/comment/1413239#comment-1413239

 

Hormone and Radiation Salvage Treatment Experiences

http://csn.cancer.org/comment/1414101#comment-1414101

http://csn.cancer.org/comment/1414282#comment-1414282

http://csn.cancer.org/node/299431

 

 

«134

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    toasting

    now

    always glad to read about good results

  • VascodaGama
    VascodaGama Member Posts: 3,700 Member

    toasting

    now

    always glad to read about good results

    Testosterone test

    I agree. We and you should be toasting.

    Regarding your worries with the Lupron effects (which I think it representing your big BUT...), I would get a testosterone test to verify any case of hypogonadism. Low levels of the stuff in circulation would have an effect on the prostatic cells (if existent) or a cause in higher levels of estrogens (female hormones) which could be behind your gynecomastia case. I wonder if your doctor is suspiscious of breast cancer.

    Best wishes for continuing remission.

    Lets drink a glass of Poirtuguese Esporao red.

    VG  

  • Will Doran
    Will Doran Member Posts: 207 Member
    Congratulations

    Josephg,

    Congratulations.  My you continue to have these good results. 

    I know where you are coming from, and understand completely.  I had a PSA of 69.  Robotic Surgery. 40% of Prostate involved. Gleason of 7, and one lymph node with a very small spot that didnt' even show up on my MRIs. Listed as a high, agressive Stage 3 or Early Stage 4.  I was treated as if I was an advanced Stage 4.   I went through 40 post surgery Radiation Treatments, and have been on Lupron for two years.    My PSA went to <0.010 two months post surgery, and has stayed there for two years.  I am now on my last Lupron shot and we hope I can stay off of the Lupron.  All my blood tests and MRIs come back clean.  The side effects from the Lupron are ugly at times, I know.  Hang in there.

    So, I know how you feel.  Congratulations and, Yes, celebrate every day.

    Best Wishes

    Peace and God Bless

    Will

  • Josephg
    Josephg Member Posts: 443 Member

    Congratulations

    Josephg,

    Congratulations.  My you continue to have these good results. 

    I know where you are coming from, and understand completely.  I had a PSA of 69.  Robotic Surgery. 40% of Prostate involved. Gleason of 7, and one lymph node with a very small spot that didnt' even show up on my MRIs. Listed as a high, agressive Stage 3 or Early Stage 4.  I was treated as if I was an advanced Stage 4.   I went through 40 post surgery Radiation Treatments, and have been on Lupron for two years.    My PSA went to <0.010 two months post surgery, and has stayed there for two years.  I am now on my last Lupron shot and we hope I can stay off of the Lupron.  All my blood tests and MRIs come back clean.  The side effects from the Lupron are ugly at times, I know.  Hang in there.

    So, I know how you feel.  Congratulations and, Yes, celebrate every day.

    Best Wishes

    Peace and God Bless

    Will

    Mammogram Results

    Hi Folks,

    I had my mammogram this week, and the results are that I have benign gynecomastia in my right breast, a condition usually resulting from a hormone imbalance in the body.  In my case, this is attributed to the Lupron and Casodex hormone therapy that I received in conjunction with my radiation treatments.

    So, I'm still in a very good place overall, and I will have a glass or three of red wine this evening and enjoy life until my next checkup in six months.  Please join me in a toast to best wishes on all of our journeys.

  • Will Doran
    Will Doran Member Posts: 207 Member
    Tenderness in Breast

    Josephg,

    Since I replied to you, I just had my yearly checkup at Radiation Oncology, last week.  The PA who sees me at this point, did a complete exam, including a DRE and she also checked my brests for lumps.  My PSA is still at <0.010, 2 years post surgery, after 2 years on Lupron and 8 weeks of radiation.  Angie (the PA) said that if at some time I had any tenderness from being on Lupron for 2 years, that they can and would do a few radiation treatments to shrink the swelling and relieve any tenderness. She told me they would do a mamogram if I had concerns. I haven't had any problem to this point.  I have my 4 month checkup with my Urologist / Surgeon on Monday (2/8), we will discuss my future plans.  I will mention these treatments to him.  At this point, however, Dr. Miller does not want me having any CT Scans or Radiation because of all the pre surgery testing that was done, and the 8 weeks of radiation that I had 1 1/2 years ago.  He will only approve using MRI's for check ups.  I will have a Bone Scan on Friday of next week (2/12). I guess that isnt' radiation, because the operator sits right beside me as she is running the scans.  I'll ask Dr. Miller that on Monday.  My chest has gained size, but most of that is becasue I'm working out at the gym two days per week on weight machines and I do free weights at home every day I'm not at the gym.  So, even while being on the Lupron, I am actually building, muscle.  I have had what is to be my last Lupron shot.  As of next week I will be off Lupron and we will check  my PSA in June with the hopes that the PSA stays at "0". So, at this point, I shouldn't have a tenderness problem since the Lupron will start to wear off over the next 12 months, so I understand.

    So, Chances are that what your doctor has said is what is happening.  The tenderness and thickning in you breast is from the Lupron.  My doctors have checked me every time I'm in for a check up for the same side effect from the Lupron.

    Good Luck, Take Care and keep up the fight.

    Peace and God Bless

    Will

  • Josephg
    Josephg Member Posts: 443 Member

    Tenderness in Breast

    Josephg,

    Since I replied to you, I just had my yearly checkup at Radiation Oncology, last week.  The PA who sees me at this point, did a complete exam, including a DRE and she also checked my brests for lumps.  My PSA is still at <0.010, 2 years post surgery, after 2 years on Lupron and 8 weeks of radiation.  Angie (the PA) said that if at some time I had any tenderness from being on Lupron for 2 years, that they can and would do a few radiation treatments to shrink the swelling and relieve any tenderness. She told me they would do a mamogram if I had concerns. I haven't had any problem to this point.  I have my 4 month checkup with my Urologist / Surgeon on Monday (2/8), we will discuss my future plans.  I will mention these treatments to him.  At this point, however, Dr. Miller does not want me having any CT Scans or Radiation because of all the pre surgery testing that was done, and the 8 weeks of radiation that I had 1 1/2 years ago.  He will only approve using MRI's for check ups.  I will have a Bone Scan on Friday of next week (2/12). I guess that isnt' radiation, because the operator sits right beside me as she is running the scans.  I'll ask Dr. Miller that on Monday.  My chest has gained size, but most of that is becasue I'm working out at the gym two days per week on weight machines and I do free weights at home every day I'm not at the gym.  So, even while being on the Lupron, I am actually building, muscle.  I have had what is to be my last Lupron shot.  As of next week I will be off Lupron and we will check  my PSA in June with the hopes that the PSA stays at "0". So, at this point, I shouldn't have a tenderness problem since the Lupron will start to wear off over the next 12 months, so I understand.

    So, Chances are that what your doctor has said is what is happening.  The tenderness and thickning in you breast is from the Lupron.  My doctors have checked me every time I'm in for a check up for the same side effect from the Lupron.

    Good Luck, Take Care and keep up the fight.

    Peace and God Bless

    Will

    Thickening Breast Tissues

    Thank you for your perspective, Will.

    Staying the course, checking our bearings, every 6 months.......

  • Josephg
    Josephg Member Posts: 443 Member
    36 Month Checkup

    Hi Folks,

    I just received my PSA test result, and I wanted to share it with you.

    The timing of this test is approximately 36 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 36 months after my last radiation treatment (38 visits, 68 Greys). 

    The result for PSA was 0.05, the first detectible reading after 30 months of non-detectible readings.  I also have a new Oncologist at the same Institution, as my original Oncologist left to pursure a pure research career.  My new Oncologist, who has 20+ years in her role, stated that she is not concerned about my latest PSA reading.  However, now that I am over my initial surprise, I will be having a follow-up conversation with her to discuss this latest result in greater detail. 

    While I recognize that I have only traveled only 6 more months down this long road, this is the first speed bump that I've encountered after my salvage treatment.  Perhaps, it is a message from the bandit currently holed up in some remote part of my body, hiding, but growing impatient. 

    I do recognize that a PSA reading of 0.05 is really low, and I've been more fortunate to date, than a lot of my brothers in this forum with PCa. 

    My next PSA test and Oncologist visit is scheduled for 6 months from now.

     Related History and Data:

     Post-Robotic Prostate Removal Surgery Pathology Report 

    A.  Lymph nodes, right pelvic:  Two (2) lymph nodes; negative for metastasis.

    B.  Lymph nodes, left pelvic:  Two (2) lymph nodes; negative for metastasis.

    C.  Prostate, radical resection:

       1.  Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.

       2.  No lymphatic/vascular invasion is present.

       3.  Perineural invasion is present.

       4.  Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).

       5.  The Seminal vesicles are free of carcinoma.

       6.  The inked margins are free of carcinoma.

       7.  High-grade PIN is present.

       8.  Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.

    D.  Left mid margin:  Fibrovascular tissue; negative for tumor.

    Diagnosis Comment:  AJCC:  pT3a NO

     Robotic Prostate Removal Surgery

    11/21/2011

    AUS 800 Artificial Sphincter Implant Surgery

    1/9/2013

     Hormone Therapy (Lupron tri-monthly and Casodex daily)

    Started 5/4/2013

    Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)

    Radiation Therapy (38 visits, 68 Grays)

    Started 6/4/2013

    Stopped 8/9/2013

    PSA History

    5.22 - 6/28/2011 (59 years old)

    0.05 - 12/22/2011

    0.05 - 3/25/2012

    0.05 - 6/22/2012

    0.06 - 10/13/2012

    0.08 - 12/31/2012

    0.11 - 3/30/2013

    0.13 - 4/23/2013

    0.02 - 8/6/2013

    0.02 - 11/26/2013

    <0.015 - 7/28/2014

    <0.015 - 1/3/2015

    <0.015 - 7/7/2015

    0.02 - 1/15/2016

    0.05 - 8/23/2016

    Related Permanent Side Effects

    Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)

    ED - Prostate removal surgery (had to remove the left side nerve bundle)

    Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex

    Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):

    Artificial Sphincter Experiences

    http://csn.cancer.org/comment/1324584#comment-1324584

    http://csn.cancer.org/comment/1326323#comment-1326323

    http://csn.cancer.org/comment/1339326#comment-1339326

    http://csn.cancer.org/comment/1339561#comment-1339561

    http://csn.cancer.org/comment/1344785#comment-1344785

    http://csn.cancer.org/comment/1413239#comment-1413239

    Hormone and Radiation Salvage Treatment Experiences

    http://csn.cancer.org/comment/1414101#comment-1414101

    http://csn.cancer.org/comment/1414282#comment-1414282

    http://csn.cancer.org/node/299431

  • VascodaGama
    VascodaGama Member Posts: 3,700 Member
    edited August 2016 #9
    Different laboratories may provide different results

    Thanks for sharing your results. The PSA is still in remission levels. Some variations can exist due to assay's tolerances, that could be as high as 0.02, or even wider if the last assay is from a different supplier.

    Best wishes for continued remission.

    VG

  • Will Doran
    Will Doran Member Posts: 207 Member
    edited September 2016 #10
    Tests after 3 years

    Josephg,

    Sounds like you are hanging in there.  Congratulations.

    I have now passed three years from diagnosis.  I just had my complete blood work done last week, and will go for my 4 month checkup at Urology on Tuesday (9/6).  They had my Testosterone knocked down to 17, with normal being between 250 - 1,100. I was on Lupron for 2 years and had 8 weeks of Radiation.   4 months ago my testosterone had come back up to 134, and my PSA was still at <0.010.  This past week my Testosterone is up into the normal range, but still low.  I'm now at 320.  With the rise in Testosterone, my PSA has come up to 0.035.  My doctor told me this would probably happen, but I think I'm still considered undetectable.  I understand that as long as the PSA stays under 0.2, there isn't much concern.

    Best wishes for your continued sucess and remission.

    Peace and God Bless

    Will

  • Josephg
    Josephg Member Posts: 443 Member
    edited March 2017 #11
    42 Month Checkup



    Hi Folks,

    I just received my PSA test result, and I wanted to share it with you.

    The timing of this test is approximately 42 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 36 months after my last salvage radiation treatment (38 visits, 68 Greys). 

    The result for PSA was 0.07, the second detectible reading in a row, after 30 months of non-detectible readings.  This also corresponds to the second straight rise in my PSA, although a 0.02 rise over 6 months is not really that large.  My Oncologist does not appear to be overly concerned at this point, and has recommended that I stay the course, and we will review the results of my next PSA test.  My next PSA test and Oncologist visit is scheduled for 6 months from now.

    Perhaps, it is a message from the bandit currently holed up in some remote part of my body, that it is awakening after a long slumber.   Like the bear coming out of hibernation, it may be hungry for "T".

     

     Related History and Data:

     Post-Robotic Prostate Removal Surgery Pathology Report 

    A.  Lymph nodes, right pelvic:  Two (2) lymph nodes; negative for metastasis.

    B.  Lymph nodes, left pelvic:  Two (2) lymph nodes; negative for metastasis.

    C.  Prostate, radical resection:

       1.  Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.

       2.  No lymphatic/vascular invasion is present.

       3.  Perineural invasion is present.

       4.  Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).

       5.  The Seminal vesicles are free of carcinoma.

       6.  The inked margins are free of carcinoma.

       7.  High-grade PIN is present.

       8.  Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.

    D.  Left mid margin:  Fibrovascular tissue; negative for tumor.

    Diagnosis Comment:  AJCC:  pT3a NO

     Robotic Prostate Removal Surgery

    11/21/2011

    AUS 800 Artificial Sphincter Implant Surgery

    1/9/2013

     Hormone Therapy (Lupron tri-monthly and Casodex daily)

    Started 5/4/2013

    Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)

    Radiation Therapy (38 visits, 68 Grays)

    Started 6/4/2013

    Stopped 8/9/2013

    PSA History

    5.22 - 6/28/2011 (59 years old)

    0.05 - 12/22/2011

    0.05 - 3/25/2012

    0.05 - 6/22/2012

    0.06 - 10/13/2012

    0.08 - 12/31/2012

    0.11 - 3/30/2013

    0.13 - 4/23/2013

    0.02 - 8/6/2013

    0.02 - 11/26/2013

    <0.015 - 7/28/2014

    <0.015 - 1/3/2015

    <0.015 - 7/7/2015

    0.02 - 1/15/2016

    0.05 - 8/23/2016

    0.07 - 2/21/2017

    Related Permanent Side Effects

    Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)

    ED - Prostate removal surgery (had to remove the left side nerve bundle)

    Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex

    Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):

    Artificial Sphincter Experiences

    http://csn.cancer.org/comment/1324584#comment-1324584

    http://csn.cancer.org/comment/1326323#comment-1326323

    http://csn.cancer.org/comment/1339326#comment-1339326

    http://csn.cancer.org/comment/1339561#comment-1339561

    http://csn.cancer.org/comment/1344785#comment-1344785

    http://csn.cancer.org/comment/1413239#comment-1413239

    Hormone and Radiation Salvage Treatment Experiences

    http://csn.cancer.org/comment/1414101#comment-1414101

    http://csn.cancer.org/comment/1414282#comment-1414282

    http://csn.cancer.org/node/299431




  • VascodaGama
    VascodaGama Member Posts: 3,700 Member
    edited March 2017 #12
    Awakening after a long slumber

    The PSA increasing histology and the dates of last interventions (HT+RT) confirms the Awakening of the bandit. I wonder what his the opinion of your oncologist.

    Though the PSA is very low, I think that recurrence is evident and that you are experiencing systemic disease. In such circumstances, the opinion of oncologists vary on procedures to follow, though the majority opt with palliative approaches. The only marker of disease progression to regulate interventions is the PSA but some wait for signals from arising symptoms. These could relate to pain, or an obvious physical change or other health deteriorations found via markers not related to the cancer.

    Among the various palliative therapies, hormonal manipulations (ADT) are the most preferred and typical as systemic therapy. You have done it before so that you know what to expect from HT drugs. Another approach for systemic treatment is the so called oligometastatic treatment that involves finding the cancer hideaways with sophisticated contrast agents and then spot radiate those lesions. The cancer should be found at a fewer number places that can still absorb additional radiation (previous RT patients). Still another option is the newer stealthy attack named "radionuclide therapy" that deliver the missiles directly to the cancer wherever it hides. The one already showing positive results is Lu-177-PSMA-617. It identifies the cancer and kills it on the spot.
    All the above approaches can be started at any time. Your oncologist request for six months may suggest that he is not worried by your PSA doubling (> 9 months is recommended). He has something in mind already.

    ADT can be planned for intermitent (IADT) administration in On/Off periods regulated via PSA thresholds (on/off switches). Each patient is different and each oncologist got their own thresholds. In my case (Gs6) the trigger to start an intervention was PSA = 1.0 ng/ml. The on-period protocol aimed to get me into castration with Eligard shots to attain a period of 12 months in remission levels (PSA<0.05 ng/ml). It took me 18 months under HT effects. The fabulous Dr. Myers considers remission at lower levels of PSA<0.01, reaching and keeping this level with several ADT blockades. The off-period means vacation from the drugs (no shots or other HT drugs). It starts once the remission period is accomplished and it last till the PSA reaches the next trigger threshold reserved by the oncologist for such particular patient. In my case it is PSA=2.5 ng/ml. I have been fortunate because the bandit allowed me already (+/-) 5 years without medication (free of meds side effects), however, the median period lengths in IADT is typically 2.5 to 3 years. Some patients prefer to extend this off-period and get higher levels of PSA as their trigger threshold, like: PSA= 5.0 or 10.0 or even higher at 20.0 ng/ml.

    Each systemic case has its own particulars and some guys become refractory sooner than others. When the initial drugs fail oncologist change weapons and use second-line HT drugs. The immune system might be targeted to react/improve situations. Combination of medications becomes typical.

    I would suggest you to investigate on systemic therapies to be prepared with inquires in your next consultation. You can read many of the threads in this forum for ideas;
    https://csn.cancer.org/node/307512

    Best wishes,

    VGama

     

  • Josephg
    Josephg Member Posts: 443 Member
    edited March 2017 #13
    Thank You

    Thank you for your perspective and suggestions, Vasco.

    As always, your feedback is both educational and thought provoking, and shows that there is always a choice of paths going forward on the joruney.  I will definitely factor your suggestions into my next conversation with my Oncologist.

    Thanks again.

    Josephg

  • Josephg
    Josephg Member Posts: 443 Member
    48 Month Checkup

     








    Hi Folks,

    I just received my latest PSA test result, and I wanted to share it with you.

    The timing of this test is approximately 48 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 42 months after my last salvage radiation treatment (38 visits, 68 Greys). 

    The result for this PSA test was 0.10, the third detectible reading in a row, after 30 months of non-detectible readings, following the salvage radiation treatment.  This also corresponds to the third straight rise in my PSA, although a 0.03 rise over 6 months is not really that large.  My Oncologist stated that she is becoming concerned at this point, as the three straight rises in the PSA level is indicative that the bandit is awake and beginning to grow again.  She has recommended that we shorten the interval for the next PSA test to 4 months, and we will review the results of that PSA test in December.  She further stated that she expects that we will see a 4th straight rise, and at that point, she will recommend a series of tests, to see if we can find the location of the bandit.

    My Oncologist does not want to wait until the PSA rises to the commonly accepted 0.20 threshhold to declare a treatment failure, but instead prefers that we remain as aggressive as possible in fighting the bandit for as long as we can, before turning to palliative treatments as a last resort.  She forewarned me that the chances of actually finding the bandit are small, due to its current presumably small size, but if we can find it, we potentially have the opportunity, depending upon where it is located, to attack it again with radiation, with the hope of killing it.  Her belief is that the bandit's most likely location is still in the area around the prostate bed, possibly in an area not contained within the path of the previous radiation treatment protocol.

    If tests are ordered, the first test will be a T3 fossa MRI, followed by a bone scan.  Depending upon the results of these two tests, she may recommend a third test, an Axumin PET scan.  If the bandit is located by these tests, we will attack it with radiation, if possible.  If the bandit cannot be located by any of these tests, my Oncologist will recommend that I start internittent palliative Lupron treatments, shortly thereafter.

    While this is not the direction of outcomes that I have been hoping for, I have lead a reasonable 6+ years since the original discovery of my PCa.  And while, I have encountered just about every negative side effect that can be experienced from all of my treatments, so far, I have maintained a good quality of life, and I have no regrets over my decisions regarding the course of my treatments to date.  I have been advised that even with the worst of outcomes regarding the planned tests and the commencement of palliative treatments going forward, I am likely to still be around in 10+ years.

    As it is for all of us, I will continue to take one day at a time on this long journey.  Again, I want to sincerely thank all of you for your steadfast support, and for the wealth of knowledge and information that you have shared with me on this journey.

     

     Related History and Data:

     Post-Robotic Prostate Removal Surgery Pathology Report 

    A.  Lymph nodes, right pelvic:  Two (2) lymph nodes; negative for metastasis.

    B.  Lymph nodes, left pelvic:  Two (2) lymph nodes; negative for metastasis.

    C.  Prostate, radical resection:

       1.  Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.

       2.  No lymphatic/vascular invasion is present.

       3.  Perineural invasion is present.

       4.  Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).

       5.  The Seminal vesicles are free of carcinoma.

       6.  The inked margins are free of carcinoma.

       7.  High-grade PIN is present.

       8.  Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.

    D.  Left mid margin:  Fibrovascular tissue; negative for tumor.

    Diagnosis Comment:  AJCC:  pT3a NO

     Robotic Prostate Removal Surgery

    11/21/2011

    AUS 800 Artificial Sphincter Implant Surgery

    1/9/2013

     Hormone Therapy (Lupron tri-monthly and Casodex daily)

    Started 5/4/2013

    Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)

    Radiation Therapy (38 visits, 68 Grays)

    Started 6/4/2013

    Stopped 8/9/2013

    PSA History

    5.22 - 6/28/2011 (59 years old)

    0.05 - 12/22/2011

    0.05 - 3/25/2012

    0.05 - 6/22/2012

    0.06 - 10/13/2012

    0.08 - 12/31/2012

    0.11 - 3/30/2013

    0.13 - 4/23/2013

    0.02 - 8/6/2013

    0.02 - 11/26/2013

    <0.015 - 7/28/2014

    <0.015 - 1/3/2015

    <0.015 - 7/7/2015

    0.02 - 1/15/2016

    0.05 - 8/23/2016

    0.07 - 2/21/2017

    0.10 - 8/22/2017

    Related Permanent Side Effects

    Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)

    ED - Prostate removal surgery (had to remove the left side nerve bundle)

    Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex

    Hematuria (abundant blood in urine) - Radiation treatments caused recurring instances of bladder wall inflammation.  Biopsy negative.

    Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):

    Artificial Sphincter Experiences

    http://csn.cancer.org/comment/1324584#comment-1324584

    http://csn.cancer.org/comment/1326323#comment-1326323

    http://csn.cancer.org/comment/1339326#comment-1339326

    http://csn.cancer.org/comment/1339561#comment-1339561

    http://csn.cancer.org/comment/1344785#comment-1344785

    http://csn.cancer.org/comment/1413239#comment-1413239

    Hormone and Radiation Salvage Treatment Experiences

    http://csn.cancer.org/comment/1414101#comment-1414101

    http://csn.cancer.org/comment/1414282#comment-1414282

    http://csn.cancer.org/node/299431








  • Josephg
    Josephg Member Posts: 443 Member
    Asking for Input and Perspective

    Hi Vasco and Folks,

    I'm asking for any input and/or perspective that you may want to offer, regarding my latest test results and the recommended treatmant plan going forward.  It is always good to have lots of input before committing to a treatment plan, and I very highly value the input and perspective offered in the fourm by my fellow PCa survivors.

    Any input and or perspective offered will be very greatly appreciated.

    Thank you.

  • VascodaGama
    VascodaGama Member Posts: 3,700 Member
    edited September 2017 #16
    Awakening reconfirmed. What's your next step?

    Josephg

    I have not much more to add to my above last post. The PSA this time shows to continue its upward trend confirming recurrence and systemic disease. You need to decide in one of the next steps: 1) try a possibility into cure with the oligometastatic treatment approach, or 2) try controlling the advancement of the bandit with a palliative protocol approach.

    The oligometastatic treatment will require you the nerve of waiting to let the cancer grown to a level that it will permit to locate it with an image study. Some guys do this treatment with negative scans (false negatives) guessing the location of the cancer to incorporate it in the spot radiation, just like the salvage RT you have done. It can hit the bandit but it can miss it again leaving you untreated but with the higher risks and side effects.

    From my researches a positive scan (true positive) got more assurances of detection if one uses the following PSA thresholds, depending on the exam of choice: PET-PSMA = 0.6 ng/ml, PET-F18 Flurocholine = 1.8 ng/ml, PET- F18 (Axumin) = 2.0, MRI-Feraheme = 2.5, MRI-C11/F18 = 2.5, MRI-Ga = 10.0, CT = 20.0, Bone scan = 30.0. These thresholds are averages from data I have been collecting in the past 5 years from several sources, for my own oligometastatic treatment.

    In any case, this period of waiting for the increase of the PSA should be carefully decided to fit the trigger threshold of the treatment defined by the oncologist. For instance, in my case with Gs6, failed RP plus failed SRT, and on intermittent HT protocol (IADT), the PSA for the scan cannot be higher than 2.5 ng/ml because this is the trigger threshold for my continuing IADT treatment. I will restart ADT with leuprolide so that I have to do the scan before the shot.

    In regards to the palliative hormonal treatment, you know the story already. I recommend you to follow a protocol involving intermittent modalities. In my case this is regulated with the PSA and testosterone (T) markers that serve as on/off switches. You should have these tests done before any HT drugs, and follow with 3-months periodicals.

    Some systemic guys with aggressive cancers and/or bone metastases are recommended to chemotherapy (or combined chemo plus HT). Chemotherapy rarely provides cure but it manages to kill some cells which is reflected in a lower PSA (a real value). Hormonal approaches manage to turn the cancer sort of indolent so that the PSA decreases but this is a masked level. Once the effect of such a treatment vanishes, the PSA starts to increase. Recurrences in chemo-patient cases would be more difficult to treat as these are expected to be from very aggressive type of cells.

     

    Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

    Surely you can expect answers from me on your inquires but you should listen to your physicians and follow your instinct. You can also discuss my opinions with your oncologist in regards to her choice of protocol. You need to use diplomacy when talking with her.

    Best wishes.

    VGama

     

  • GeorgeG
    GeorgeG Member Posts: 152
    edited September 2017 #17
    As usual VG has a lot of good

    As usual VG has a lot of good data so I won't repeat it here. The trick on this is that in the early part of the rising PSA, detecting on imaging is not likely as described here but eventually the odds of survival or significant delay get worse with this increasing PSA. I failed after RP and the MSK charts as well as doctor input described probabilities of cure dropping below 50% as I was exceeding 0.5 PSA. My scans were negative as VG's data would suggest. I did opt for an advanced MRI of the prostate bed but it also did not show anything. I opted for SRT as my PSA was approaching 1.0 based on statistics (Johns Hopkins and Mayo both recommend this, with ADT) but then we had to shoot in the dark so to speak. They base the field and strength based on historical data regarding recurrance and my specifics from the RP pathology as well as the outcome of having done so vs doing nothing or waiting. It sure would have been nice to verify first with imaging and I considered waiting but opted for SRT. There is a similar program post RP for high risk guys such as Gleason 8+ and/or positive margins soon after surgery where there is usually no imaging verification either - adjuvant radiation. A question that is difficult to answer even when you study the data is if there is a sutvival benefit to intervention at this point or does the data about rising PSA merely describe your odds regardless of what you do. Thats not a pleasant thing to consider but especially beore the modern PSA era intervention did not change the outcome much for the large numbers. My sense is that we are getting better at choosing when and how so that treatments have been starting to move the needle with regards to mortality outcome. In the end, we should pick great doctors and consider their recommendations strongly but then you have to decide if you are a wait and see guy, a go at it strong kinda guy. I always play the movie the forward and think through how I would feel if I took action and then was right or wrong and then if I took no action and was right or was wrong. That helps me know what to do.

    Best of luck for you.

    George

  • Josephg
    Josephg Member Posts: 443 Member
    edited September 2017 #18
    Thank You

    Thank you for your input and perspectives, Vasco and George.  Very much appreciated.

    This gives me additional data points to consider, when deciding on my next course of actions, regarding my specific case.  When considering treatment options/alternatives, it is important to have a solid mix of both medical professional opinions/recommendations and personal experiences and perspectives from PCa survivors, before making a final decision.

    Obtaining this valuable PCa survivor input is one of most important insights gained by participating in this forum.

    Thanks again, and I wish you all continued success on your journeys.

  • Josephg
    Josephg Member Posts: 443 Member
    edited December 2017 #19
    52 Month Checkup







    Hi Folks,

    I just received my latest PSA test result, and I wanted to share it with you.

    The timing of this test is approximately 52 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 46 months after my last salvage radiation treatment (38 visits, 68 Greys). 

    The result for this PSA test was 0.13, the fourth detectible reading in a row, after 30 months of non-detectible readings, following the salvage radiation treatment.  This also corresponds to the fourth straight rise in my PSA, although I am advised that a 0.03 rise over 4 months is not really that large.  My Oncologist stated that in her opinion, she's ready to declare that the previous surgery and salvage radiations treatments failed to kill all of the cancer cells; however, she wants to observe the PSA results in another 4-5 months, and see how much further it rises.  She further stated that the current rate of rise is slow-to-moderate in general terms, but in order to determine the doubling rate with any degree of reliability, she wants to evaluate 3 or more successive PSA rises over an initial threshold of 0.10.

    My Oncologist further advised me that the institute is running a trial for a vaccination that, if the outcome is successful, will slow the growth of the cancer, and it could potentially add another weapon to the palliative treatment arsenal.  This treatment could potentially be used before placing a patient on palliative hormone treatments.  For me, this trial is not an option at this time, as the minimum required PSA level to quality for this trial is 0.80.  But, just the thought that there may be an additional weapon available in the palliative treatment arsenal is very encouraging.

    As it is for all of us, I will continue to take one day at a time on this long journey.  Again, I want to sincerely thank all of you for your steadfast support, and for the wealth of knowledge and information that you have shared with me on this journey.

     

     Related History and Data:

     Post-Robotic Prostate Removal Surgery Pathology Report 

    A.  Lymph nodes, right pelvic:  Two (2) lymph nodes; negative for metastasis.

    B.  Lymph nodes, left pelvic:  Two (2) lymph nodes; negative for metastasis.

    C.  Prostate, radical resection:

       1.  Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.

       2.  No lymphatic/vascular invasion is present.

       3.  Perineural invasion is present.

       4.  Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).

       5.  The Seminal vesicles are free of carcinoma.

       6.  The inked margins are free of carcinoma.

       7.  High-grade PIN is present.

       8.  Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.

    D.  Left mid margin:  Fibrovascular tissue; negative for tumor.

    Diagnosis Comment:  AJCC:  pT3a NO

     Robotic Prostate Removal Surgery

    11/21/2011

    AUS 800 Artificial Sphincter Implant Surgery

    1/9/2013

     Hormone Therapy (Lupron tri-monthly and Casodex daily)

    Started 5/4/2013

    Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)

    Radiation Therapy (38 visits, 68 Grays)

    Started 6/4/2013

    Stopped 8/9/2013

    PSA History

    5.22 - 6/28/2011 (59 years old)

    0.05 - 12/22/2011

    0.05 - 3/25/2012

    0.05 - 6/22/2012

    0.06 - 10/13/2012

    0.08 - 12/31/2012

    0.11 - 3/30/2013

    0.13 - 4/23/2013

    0.02 - 8/6/2013

    0.02 - 11/26/2013

    <0.015 - 7/28/2014

    <0.015 - 1/3/2015

    <0.015 - 7/7/2015

    0.02 - 1/15/2016

    0.05 - 8/23/2016

    0.07 - 2/21/2017

    0.10 - 8/22/2017

    0.13 - 12/29/2017

    Related Permanent Side Effects

    Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)

    ED - Prostate removal surgery (had to remove the left side nerve bundle)

    Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex

    Hematuria (abundant blood in urine) - Radiation treatments caused recurring instances of bladder wall inflammation.  Biopsy negative.

    Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):

    Artificial Sphincter Experiences

    http://csn.cancer.org/comment/1324584#comment-1324584

    http://csn.cancer.org/comment/1326323#comment-1326323

    http://csn.cancer.org/comment/1339326#comment-1339326

    http://csn.cancer.org/comment/1339561#comment-1339561

    http://csn.cancer.org/comment/1344785#comment-1344785

    http://csn.cancer.org/comment/1413239#comment-1413239

    Hormone and Radiation Salvage Treatment Experiences

    http://csn.cancer.org/comment/1414101#comment-1414101

    http://csn.cancer.org/comment/1414282#comment-1414282

    http://csn.cancer.org/node/299431








  • Steve1961
    Steve1961 Member Posts: 608 Member
    edited December 2017 #20
    Josephg said:

    36 Month Checkup

    Hi Folks,

    I just received my PSA test result, and I wanted to share it with you.

    The timing of this test is approximately 36 months after my 2nd and last Lupron shot (two 3-month dosages), and also approximately 36 months after my last radiation treatment (38 visits, 68 Greys). 

    The result for PSA was 0.05, the first detectible reading after 30 months of non-detectible readings.  I also have a new Oncologist at the same Institution, as my original Oncologist left to pursure a pure research career.  My new Oncologist, who has 20+ years in her role, stated that she is not concerned about my latest PSA reading.  However, now that I am over my initial surprise, I will be having a follow-up conversation with her to discuss this latest result in greater detail. 

    While I recognize that I have only traveled only 6 more months down this long road, this is the first speed bump that I've encountered after my salvage treatment.  Perhaps, it is a message from the bandit currently holed up in some remote part of my body, hiding, but growing impatient. 

    I do recognize that a PSA reading of 0.05 is really low, and I've been more fortunate to date, than a lot of my brothers in this forum with PCa. 

    My next PSA test and Oncologist visit is scheduled for 6 months from now.

     Related History and Data:

     Post-Robotic Prostate Removal Surgery Pathology Report 

    A.  Lymph nodes, right pelvic:  Two (2) lymph nodes; negative for metastasis.

    B.  Lymph nodes, left pelvic:  Two (2) lymph nodes; negative for metastasis.

    C.  Prostate, radical resection:

       1.  Prostatic adenocarcinoma, Gleason grade 4+3=7, involving both lobes, at least 2.1cm and occupying 15% of the prostate by volume.

       2.  No lymphatic/vascular invasion is present.

       3.  Perineural invasion is present.

       4.  Invasive carcinoma focally extends into extraprostatic soft tissue adjacent to the left posterior prostate (C20).

       5.  The Seminal vesicles are free of carcinoma.

       6.  The inked margins are free of carcinoma.

       7.  High-grade PIN is present.

       8.  Necrotizing granulomas are present within the prostate parenchyma; stains for microorganisms will be performed and reported in an addendum.

    D.  Left mid margin:  Fibrovascular tissue; negative for tumor.

    Diagnosis Comment:  AJCC:  pT3a NO

     Robotic Prostate Removal Surgery

    11/21/2011

    AUS 800 Artificial Sphincter Implant Surgery

    1/9/2013

     Hormone Therapy (Lupron tri-monthly and Casodex daily)

    Started 5/4/2013

    Stopped 11/6/2013 (2nd and last 3-month dosage shot given on 8/6/2013)

    Radiation Therapy (38 visits, 68 Grays)

    Started 6/4/2013

    Stopped 8/9/2013

    PSA History

    5.22 - 6/28/2011 (59 years old)

    0.05 - 12/22/2011

    0.05 - 3/25/2012

    0.05 - 6/22/2012

    0.06 - 10/13/2012

    0.08 - 12/31/2012

    0.11 - 3/30/2013

    0.13 - 4/23/2013

    0.02 - 8/6/2013

    0.02 - 11/26/2013

    <0.015 - 7/28/2014

    <0.015 - 1/3/2015

    <0.015 - 7/7/2015

    0.02 - 1/15/2016

    0.05 - 8/23/2016

    Related Permanent Side Effects

    Complete Incontinence - Prostate removal surgery (had to remove the left side nerve bundle)

    ED - Prostate removal surgery (had to remove the left side nerve bundle)

    Gynecomastia (benign breast tissue growth) - Hormone treatments of Lupron and/or Casodex

    Previous Related Posts (Mostly artificial sphincter and hormone/radiation experiences):

    Artificial Sphincter Experiences

    http://csn.cancer.org/comment/1324584#comment-1324584

    http://csn.cancer.org/comment/1326323#comment-1326323

    http://csn.cancer.org/comment/1339326#comment-1339326

    http://csn.cancer.org/comment/1339561#comment-1339561

    http://csn.cancer.org/comment/1344785#comment-1344785

    http://csn.cancer.org/comment/1413239#comment-1413239

    Hormone and Radiation Salvage Treatment Experiences

    http://csn.cancer.org/comment/1414101#comment-1414101

    http://csn.cancer.org/comment/1414282#comment-1414282

    http://csn.cancer.org/node/299431

    Sorry but wondering

    hello sorry for all the complications but congrats on doing well...I am just wondering a few things if i may ..seems like your PSA was well under 10 and it seems like it only was occupying 15% of the prostrate ..I not sure how many tumors were present ..from what I understand Gleason 4-3 maybe more aggressive than 3-4 ...sorry but hearing your story a RP I thought would have taken care of it all....sorry I was just diagnosed myself and am trying to figure out my best treatment ..thanks ohh I am 57. 5.0 PSA for 6 years with 2+neg biopsies now after 26 months no testing like a fool I have8.1 PSA 3 pos core 2 of them 3-4 1 3-3 ..2 urologists and 1 radiation guy all sa to take it out and they think I will be ok ....but after reading all this great info ..I wonder..any siggedtions thsnks ..I guess the t3 mri I will be getting in 2 weeks will tell the tale....waiting is soo awful ..god bless u and keep up the good work 

  • VascodaGama
    VascodaGama Member Posts: 3,700 Member
    Still low PSA

    Enjoy the holiday season. The PSA is still very low. Your oncologist is doing well in waiting for additional values.

    Best wishes for 2018.

    VG