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Thread: Need lots of advice - PSA rising - results I didn't want to see

  1. #1
    Senior User
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    Need lots of advice - PSA rising - results I didn't want to see

    Hello All;
    Looks like I'm heading for salvage radiation.

    My PSA 3 months ago was .03 and yesterday it is .05.

    I had surgery by a doctor at the Cleveland Clinic but that doctor apparently left the clinic a few months ago and now I can't even message him. They made me a followup appointment with a Certified Nurse Practitioner for 3 months from now and I can't even message her to have questions answered because apparently you can only message doctors through Mychart.

    How do I find a Radiation Oncologist ? Are there world class radiation oncologists like there are world class doctors? How do I find one? Should I receive treatment at the Cleveland Clinic or should I travel somewhere ?

    I really want to do something as soon as possible because .03 to .05 is quite a big jump. If I wait even 3 months, it may jump to .07.

    Tim
    Age at diagnosis: 57
    8/15/14 PSA 2.9
    3/01/17 PSA 5.9
    5/1/17 Biopsy Results
    6 cores positive out of 12
    1. G 6 - 45%, 2. G7 (3+4) - 70%, 3. G6 - <5%, 4. G7 (3+4) - 40% Perineural Invasion Identified
    5. G6 - 15%, 6. G6 - 15%
    CT and bone scan negative
    Biopsy second opinion by the Cleveland Clinic: Still G3+4 (% of pattern 4 in each of two cores = 5% of tumor)
    Pre Surgery PSA = 6.11, Free PSA = 13%
    Davinci performed August 1, 2017 at Cleveland Clinic
    Catheter out August 9, 2017
    Pathology: Pathologic Stage - pT2: Organ confined, Gleason Score 3+4=7: Grade Group 2.
    % of pattern 4: 1-10%, % of pattern 3: 91-100%
    SV -, BN -, LN -
    Margin of resection is focally positive for tumor, Length of positive margin: 1mm
    Gleason pattern at positive margin: Pattern 3.
    Post-Op PSA History: 9/14/17 <.03, 11/10/17 <.03, 5/10/18 <.03, 7/19/18 <.03, 9/15/18 <.03, 11/14/18 .03, 02/18/19 .05, 3/12/19 .05, 4/22/19 .06
    SRT begin 5/7/19, 70.2 gy total in 35 fractions.

  2. #2
    Quote Originally Posted by wtdedula View Post
    Hello All;
    Looks like I'm heading for salvage radiation.

    My PSA 3 months ago was .03 and yesterday it is .05.

    I had surgery by a doctor at the Cleveland Clinic but that doctor apparently left the clinic a few months ago and now I can't even message him. They made me a followup appointment with a Certified Nurse Practitioner for 3 months from now and I can't even message her to have questions answered because apparently you can only message doctors through Mychart.

    How do I find a Radiation Oncologist ? Are there world class radiation oncologists like there are world class doctors? How do I find one? Should I receive treatment at the Cleveland Clinic or should I travel somewhere ?

    I really want to do something as soon as possible because .03 to .05 is quite a big jump. If I wait even 3 months, it may jump to .07.

    Tim
    You have time for analysis and researching SRT options. But that time is now. I used a RapidArc machine at MDAnderson with no ADT and no lymph node involvement. There are other options, i.e. proton, added ADT, LN included, etc. With your low psa it's questionable whether ADT or LN would be necessary.
    YOB 1957, Age at Dx 57. Pre-surgery psa 5.9, 5-27-2014 RP, T2c, 3 G7 (3+4), 4 G6 (3+3). 50% involved. Prostate 28g. +2 margins (lateral, apical). Post surgery psa <.006, 19 month psa 0.023 on 12-16-15.
    70gy/35 SRT finished 2-16. 3 mo Post SRT Psa on 4-16-16 0.02 (no change), 6 mo 0.009, 9 mo .006, 12 mo .008, 15 mo and currently <.006

  3. #3
    Senior User
    Join Date
    Jan 2019
    Posts
    311
    I would call direct into oncology department at Cleveland Clinic and have them set you up ASAP.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk. 38% risk 5 year metastasis.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT started 6/3/2019

  4. #4
    Whatever doc takes over your case will no doubt want to confirm your last rise. The change from <0.03 to 0.03 could have been something as small as a momentary fluctuation from 0.029 to 0.030. It is important to repeat the test after some interval you doc will choose to see if the current 0.05 is an outlier or if it will repeat or increase. The rate of rise of your PSA will be an important factor, not just its actual value. Given the pattern 3 at your positive margin, your docs may not want to rush---and perhaps do some imaging, such as PSMA-PET or genomic testing if your rise continues. When BCR is confirmed or anticipated, it is important to have some idea of the source and location before starting SRT.
    Last edited by DjinTonic; 02-20-2019 at 02:15 AM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. biopsies, PCA3 -
    2013 TURP (90→30 g) path. neg. for cancer; then 6-mo. checkups
    6-06-17 DRE: nodule R and PSA rise, on finasteride: 3.6→4.3
    6-28-17 Biopsy #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 5% RLM
    Bone scan, CTs, X-rays: negative
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 bilat. acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5 x 5 x 4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%; 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 weeks) PSA <0.1;
    LabCorp uPSA (Roche ECLIA):
    11-28-17 (3 mo. ) 0.010
    02-26-18 (6 mo. ) 0.009
    05-30-18 (9 mo. ) 0.007
    08-27-18 (1 year) 0.018
    09-26-18 (13 mo) 0.013 (checking rise)
    11-26-18 (15 mo) 0.012
    02-25-19 (18 mo) 0.015
    05-22-19 (21 mo) 0.015

  5. #5
    Top User garyi's Avatar
    Join Date
    Apr 2017
    Posts
    1,172
    I assume your CC is the Ohio one. They aren't living up to their sterling reputation.

    Djin is giving you good advise. I wouldn't be in such a hurry to rush into SRT at your relatively low PSA. Give it some time to settle, and find another RO soon.
    72...LUTS for the past 7 years
    TURP 2/16,
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2c pNO pMn/a Grade 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor remains in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19
    We'll see....what is not known dwarfs what is thought to be fact

  6. #6
    Senior User
    Join Date
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    Quote Originally Posted by garyi View Post
    I assume your CC is the Ohio one. They aren't living up to their sterling reputation.

    Djin is giving you good advise. I wouldn't be in such a hurry to rush into SRT at your relatively low PSA. Give it some time to settle, and find another RO soon.
    Thanks or both of your advice, garyi, and Djin and the other folks who offered suggestions too.

    Yes, garyi - CC is supposed to be #1 in urology, and #5 in cancer. I think my surgeon did pretty good since there were no complications of the actual surgery and he can't see microscopic cancer cells that could escape. Based upon my extensive research and reading some folks BCR even from hospitals more respected than the Cleveland Clinic and even without positive margins. Well I made an appointment with a RO for early in March at a Cleveland Clinic facility near me. I'll see what he suggests. I think I'll ask for monthly ultra sensitive PSA tests just to keep tabs on what my PSA is doing more closely. I am nervous because I want to knock out any remaining cancer cells before they get out of hand. I probably should get a second opinion too from another RO too, perhaps not from the Cleveland Clinic. There are several other pretty good hospitals near me. I see some folks pulling the trigger on SRT at ridiculously low PSA values like .018 providing they see a trend upward. While I've passed .02, I'm willing to pull the trigger too if I see a clear trend upward too after beginning monthly PSA tests. But I'm also anxious to hear what the RO thinks too. I was hoping to delay SRT until I retire next year but that may not be possible to wait that long.

    Tim
    Last edited by wtdedula; 02-21-2019 at 02:26 AM.
    Age at diagnosis: 57
    8/15/14 PSA 2.9
    3/01/17 PSA 5.9
    5/1/17 Biopsy Results
    6 cores positive out of 12
    1. G 6 - 45%, 2. G7 (3+4) - 70%, 3. G6 - <5%, 4. G7 (3+4) - 40% Perineural Invasion Identified
    5. G6 - 15%, 6. G6 - 15%
    CT and bone scan negative
    Biopsy second opinion by the Cleveland Clinic: Still G3+4 (% of pattern 4 in each of two cores = 5% of tumor)
    Pre Surgery PSA = 6.11, Free PSA = 13%
    Davinci performed August 1, 2017 at Cleveland Clinic
    Catheter out August 9, 2017
    Pathology: Pathologic Stage - pT2: Organ confined, Gleason Score 3+4=7: Grade Group 2.
    % of pattern 4: 1-10%, % of pattern 3: 91-100%
    SV -, BN -, LN -
    Margin of resection is focally positive for tumor, Length of positive margin: 1mm
    Gleason pattern at positive margin: Pattern 3.
    Post-Op PSA History: 9/14/17 <.03, 11/10/17 <.03, 5/10/18 <.03, 7/19/18 <.03, 9/15/18 <.03, 11/14/18 .03, 02/18/19 .05, 3/12/19 .05, 4/22/19 .06
    SRT begin 5/7/19, 70.2 gy total in 35 fractions.

  7. #7
    Senior User
    Join Date
    May 2017
    Posts
    209
    Hello All;
    Just thought I'd mention that a doctor from the Cleveland Clinic called today about my two consecutive PSA rises and advised me to make an appointment with a radiation oncologist. I'm really impressed that an actual doctor called and not just a nurse or appointment secretary. He said my PSA isn't rising that fast and he also noted that it was over a year post RP that it started rising so I took these to be good signs. I asked him about my surgeon and he wouldn't give me any details - said he just left the clinic suddenly. I hope nothing bad happened to him like an accident or nervous breakdown.

    But the big thing I told him when he suggested I make an appointment with a Radiation Oncologist is that I was one step ahead of him and already did ... for next Monday. I also asked him for a few excellent urologist recommendations for followup care as an alternative for my current Nurse Practicioner recommendation and he gave me several. One stuck in my mind so I will likely make an appointment eventually, depending upon what my radiation oncologist says and if or when we will start radiation.

    Tim
    Age at diagnosis: 57
    8/15/14 PSA 2.9
    3/01/17 PSA 5.9
    5/1/17 Biopsy Results
    6 cores positive out of 12
    1. G 6 - 45%, 2. G7 (3+4) - 70%, 3. G6 - <5%, 4. G7 (3+4) - 40% Perineural Invasion Identified
    5. G6 - 15%, 6. G6 - 15%
    CT and bone scan negative
    Biopsy second opinion by the Cleveland Clinic: Still G3+4 (% of pattern 4 in each of two cores = 5% of tumor)
    Pre Surgery PSA = 6.11, Free PSA = 13%
    Davinci performed August 1, 2017 at Cleveland Clinic
    Catheter out August 9, 2017
    Pathology: Pathologic Stage - pT2: Organ confined, Gleason Score 3+4=7: Grade Group 2.
    % of pattern 4: 1-10%, % of pattern 3: 91-100%
    SV -, BN -, LN -
    Margin of resection is focally positive for tumor, Length of positive margin: 1mm
    Gleason pattern at positive margin: Pattern 3.
    Post-Op PSA History: 9/14/17 <.03, 11/10/17 <.03, 5/10/18 <.03, 7/19/18 <.03, 9/15/18 <.03, 11/14/18 .03, 02/18/19 .05, 3/12/19 .05, 4/22/19 .06
    SRT begin 5/7/19, 70.2 gy total in 35 fractions.

  8. #8
    Hi Tim,

    Sorry your PSA seems to be rising, but yes, regarding prognostication, if it goes up, the later after surgery, the better, and the slower the rise, the better.

    Please keep us posted with regard to your workup in the coming weeks. I'm especially interested in any imaging to locate possible targets for RT, given your pT2 staging (with a small positive margin with pattern 3).

    Discussing post-op PSA rise, my doc reiterated that a rising PSA does sometimes stabilize, and cited the data JH presented when they originally suggested a PSA of 0.4 when the 0.2 level was established for BCR.

    Thanks,

    Djin
    Last edited by DjinTonic; 02-27-2019 at 05:11 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. biopsies, PCA3 -
    2013 TURP (90→30 g) path. neg. for cancer; then 6-mo. checkups
    6-06-17 DRE: nodule R and PSA rise, on finasteride: 3.6→4.3
    6-28-17 Biopsy #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 5% RLM
    Bone scan, CTs, X-rays: negative
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 bilat. acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5 x 5 x 4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%; 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 weeks) PSA <0.1;
    LabCorp uPSA (Roche ECLIA):
    11-28-17 (3 mo. ) 0.010
    02-26-18 (6 mo. ) 0.009
    05-30-18 (9 mo. ) 0.007
    08-27-18 (1 year) 0.018
    09-26-18 (13 mo) 0.013 (checking rise)
    11-26-18 (15 mo) 0.012
    02-25-19 (18 mo) 0.015
    05-22-19 (21 mo) 0.015

  9. #9
    Top User garyi's Avatar
    Join Date
    Apr 2017
    Posts
    1,172
    Quote Originally Posted by DjinTonic View Post
    Hi Tim,

    Discussing post-op PSA rise, my doc reiterated that a rising PSA does sometimes stabilize, and cited the data JH presented when they originally suggested a PSA of 0.4 when the 0.2 level was established for BCR.
    As I've stated before, you have a very wise physician. My heart goes out the all our brothers anguish worrying about BCR, when the evidence of when it really occurs, and what the impact means, is so weak.

    Lots of business for radiation oncologists, however, along with years of follow up appointments for continued ADT, with similar weak evidence that the ADT really helps.

    Stay strong, you guys!
    72...LUTS for the past 7 years
    TURP 2/16,
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2c pNO pMn/a Grade 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor remains in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19
    We'll see....what is not known dwarfs what is thought to be fact

  10. #10
    Senior User
    Join Date
    Jan 2019
    Posts
    311
    Quote Originally Posted by wtdedula View Post
    Thanks or both of your advice, garyi, and Djin and the other folks who offered suggestions too.

    Yes, garyi - CC is supposed to be #1 in urology, and #5 in cancer. I think my surgeon did pretty good since there were no complications of the actual surgery and he can't see microscopic cancer cells that could escape. Based upon my extensive research and reading some folks BCR even from hospitals more respected than the Cleveland Clinic and even without positive margins. Well I made an appointment with a RO for early in March at a Cleveland Clinic facility near me. I'll see what he suggests. I think I'll ask for monthly ultra sensitive PSA tests just to keep tabs on what my PSA is doing more closely. I am nervous because I want to knock out any remaining cancer cells before they get out of hand. I probably should get a second opinion too from another RO too, perhaps not from the Cleveland Clinic. There are several other pretty good hospitals near me. I see some folks pulling the trigger on SRT at ridiculously low PSA values like .018 providing they see a trend upward. While I've passed .02, I'm willing to pull the trigger too if I see a clear trend upward too after beginning monthly PSA tests. But I'm also anxious to hear what the RO thinks too. I was hoping to delay SRT until I retire next year but that may not be possible to wait that long.

    Tim
    Unless you are considering OSU, I would not be getting a second opinion here in Ohio. Not that our hospitals here are bad, but they are not top tier cancer centers.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk. 38% risk 5 year metastasis.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT started 6/3/2019

 

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