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

  1. #11
    Hi Tim! Very glad that you received a call from a CC MD! I'm sure the MD was impressed that you proactively had already scheduled a consultation with an RO.

    Treatment is not likely imminent until it is determined that you have a clinically rising PSA. Thus, best wishes for your next PSA result to be <0.05!

    MF

  2. #12
    Senior User
    Join Date
    May 2017
    Posts
    192
    Hello All;
    I thought I'd post a message today because I just came back from my first visit with a radiation oncologist. He said with my last two rising PSA values, he would feel confortable waiting 3 months and checking PSA again. I told him I was unconfortable waiting that long and would feel better checking every month so he ordered another PSA test for the middle of this month which will be a month from my previous test with a .05 reading. Then my appointment is for a day after that test at which time we'll decide whether to wait longer, or to treat.

    I asked him about the "Newness" of the equipment and the training and qualifications of the staff running it. He didn't comment on whether it was the latest and greatest but he indicated that didn't really matter. He did share that it was made by Seimens. He did talk a lot about a CT scanner though I don't know if it was separate or built into the Siemens equipment. I asked him if this was the same equipment they have at Cleveland Clinic's main campus and he said that CCF downtown uses different equipment but the result would be exactly the same at the main campus or at a suburban campus where I plan to be treated. The doctor indicated that he set up the Radiation Oncology department at the suburban location where I am being treated and he handpicked his entire team which he said had a 0% turnover meaning everyone working there about 7 years ago when the lab was first built are still working there today. He mentioned he has a physicist on his team too.

    I asked him if he thought I needed horomone therapy and he said he didn't feel there was any benefit given my pathology report and pre-surgery gleason score. He said he would only recommend HT to someone with a Gleason score of 8, 9, or 10 since it comes with a long list of side effects. He did say that they are going to begin a trial on a new drug that blocks testosterone at the Cleveland Clinic and he said I can participate in that if I want. He said I would take that in pill form and he gave me the impression that the side effects are much less. I thought that was interesting - I'll have to follow it. If I hear anything about it or can link to the actual study info, I'll post it on this forum.

    I asked him about side effects from the radiation treatment. He said I could have some burning or bloody urination during the treatments but that should go away shortly after the treatments end he said. I asked him about long term side effects and he really didn't indicate much of an issue there. While incontinence is cited as a side effect, he really didn't see it as a problem. The way he explained it, maybe 2 % of people have incontinence following RP and he said another 2% have it after radiation - so I take this to mean 4% total have it after a combined RP and Radiation.

    Finally, I asked him some questions about the probably of PSA coming back after radiation and also the probably of the cancer remaining in the prostate bed or spreading. To the answer of spreading form the prostate bed, he said it is possible even before RP but he said given my pathology, he didn't feel it was too likely. He said I may live for a very long time before the cancer grows large enough to cause problems even without being treated but being treated with radiation lessons the chances of cancer growing.

    When I asked abut the probably of cancer spreading, he directed me to the nemographs. I asked how accurate those are and he said they're the most accurate thing we have right now. When I asked about the probably of PSA coming back after treatment, he cited a chance (with my pathology) of 25-30%. I thought that was a little high given my pathology but I guess he was leveling with me and that's probably a good doctor and good thing.

    By the way, a few moe things I'll mention - treatment only takes 15-20 minutes per visit, 35 treatments Monday-Friday which will be 7 weeks. He does have his patients drink water prior to visiting - forgot whether is was 20 or 24 ounces. He says this is to get the bladder and nearby organs away from the prostate bed.

    Well that's it. Interesting visit and nice doctor. Well I'll wait a few weeks more for my next PSA test and hoping it stabilizes, or even goes down.

    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 Scan 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%
    Seminal Vessels: Negative, Bladder neck invasion: Not Identified, 4 Lymph Nodes: Negative
    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

  3. #13
    Thanks for the detailed updated with the RO! A few questions:

    Don't you think that there is a possibility that the remaining prostate tissue is the pattern 3 at the positive margin? I get the impression that your RO would be fine waiting to see if your PSA levels out -- it's still low.

    Did you discuss any imaging (auxim, Ga PSMA-PET) to rule out lesions outside the prostate fossa, even if this is less likely?

    What type of RT would he advise if you decide to have RT? Did you discuss hypofractionated schedules?

    Thanks!

    Djin
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. biopsies, PCA3 -
    2013 TURP (90→30 g) then PSA 2x/yr, DRE yearly
    6-06-17 DRE: nodule R, 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 LVI SVI LN(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; Pomi-T (2/day)
    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

  4. #14
    Senior User
    Join Date
    May 2017
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    Quote Originally Posted by DjinTonic View Post
    Thanks for the detailed updated with the RO! A few questions:

    Don't you think that there is a possibility that the remaining prostate tissue is the pattern 3 at the positive margin? I get the impression that your RO would be fine waiting to see if your PSA levels out -- it's still low.

    Did you discuss any imaging (auxim, Ga PSMA-PET) to rule out lesions outside the prostate fossa, even if this is less likely?

    What type of RT would he advise if you decide to have RT? Did you discuss hypofractionated schedules?

    Thanks!

    Djin
    I got the impression he didn't check my final pathology because he didn't seem to know about the pattern 3 at the positive margin (I had to tell him) but he did know about the positive margin so I suspect he did read the surgeons notes. However, the surgeon made a mistake during my last followup (before he left the clinic) when he listed my post surgery gleason score as 4+3 instead of 3+4 as the pathology stated. This was a little weird I thought and I questioned it but still did not get an acknowledgement that this was a mistake. Everything points to 3+4 - the two biopsy reviews and the final pathology.

    Also my final pathology stated that 1-10% of my cancer was G4 and 90-99% is G3 - I wonder if this may be because the pathologist couldn't decide where a certain area of cells are G3 or G4. Has anyone else's final pathology marked like this with a range of percentages?

    Do you think I need a second opinion on the final pathology slides ? I got a second opinion on the biopsy but not the final pathology.

    I didn't think to ask but will ask that question at my next followup. No additional imaging was mentioned unless you count the CT scanner in connection with the machine that delivers the radiation. Though it sounded like this is to align the machine with the prostate bed and no diagnostic imaging.

    He didn't mention any type but he did mention hypofractional at one time I think. For schedule, are you referring to the number of sessions? He said 35 sessions M-F or 7 weeks of treatment.

    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 Scan 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%
    Seminal Vessels: Negative, Bladder neck invasion: Not Identified, 4 Lymph Nodes: Negative
    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

  5. #15
    I'm no one to second guess your docs, but definitely email or bring a list of questions to your next visit.

    Yes, by schedule I mean the number of sessions. The session radiation dose (fraction) is just that, the total radiation to be given, expressed in gray (Gy), divided by the number of sessions. Hypofractionation increases the session dose to reduce the number of sessions for convenience.

  6. #16
    Senior User
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    Quote Originally Posted by DjinTonic View Post
    I'm no one to second guess your docs, but definitely email or bring a list of questions to your next visit.

    Yes, by schedule I mean the number of sessions. The session radiation dose (fraction) is just that, the total radiation to be given, expressed in gray (Gy), divided by the number of sessions. Hypofractionation increases the session dose to reduce the number of sessions for convenience.
    OK I'll ask about the dosage during my next visit. I got the impression he was going to go low and slow to reduce the side effects as he did indicate that. While going for 7 weeks is kinda a pain due to work as long as he thinks that would be just as effective, I'm OK with it. I do have a little bit of incontinence now - not much and not annoying but I don't want to make it much worse.

    The nurse did give me a number to call if I had further questions but since I am going to followup with the Doc. after my next PSA test in 2 weeks, I figure I'll just ask him then. Btw - it was my choice to have a PSA test in a month, he said he would feel comfortable waiting even 3 months given my fairly low PSA rate of increase. He doesn't think we'll get that much meaningful data so soon but we'll see. Best thing for me is for my PSA to either stay the same, or drop in 1 month (2 weeks from now).

    I'll revisit this thread just before my followup in 2 weeks and will ask the questions indicated. Btw - I did have a notebook with me today and did have some questions but not the questions you brought up. Thanks for your continued advice.

    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 Scan 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%
    Seminal Vessels: Negative, Bladder neck invasion: Not Identified, 4 Lymph Nodes: Negative
    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

  7. #17
    Just to be clear, I wasn't advocating for or against hypofractionation, but am curious about the type of radiation and schedule in general for bichemical recurrence for our Forum Brothers.

    I think a 30-day PSA is a good compromise. My doc wanted it instead of waiting my usual 3-month interval when I had a higher than expected PSA (It came down in fact). So it can satisfy an anxious patient if it's an outlier. It might on the other hand be enough time to not only confirm the previous value, but even register a slight further increase if the PSA is indeed trending up.

    Subforum Topic (K) with studies on BCR and Adjuvant & Salvage RT8 is by far the most visited thread there, since (1) a good portion of men face BCR after primary treatment and (2) this is an area of PCa where no best practice has been established, with urologist and ROs often differing and even ROs are about evenly split on when to retreat. The well-known problem (and active area of research) is wanting to act early enough to offer maximum benefit from the RT, while not wanting to overtreat those men who would otherwise not go on to BCR with a PSA of 0.2.
    Last edited by DjinTonic; 03-05-2019 at 03:15 AM.

  8. #18
    Top User
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    Posts
    1,346
    Thank you for your detailed report. You were well prepared. Will be following.

  9. #19
    Senior User
    Join Date
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    Quote Originally Posted by DjinTonic View Post
    Just to be clear, I wasn't advocating for or against hypofractionation, but am curious about the type of radiation and schedule in general for bichemical recurrence for our Forum Brothers.

    I think a 30-day PSA is a good compromise. My doc wanted it instead of waiting my usual 3-month interval when I had a higher than expected PSA (It came down in fact). So it can satisfy an anxious patient if it's an outlier. It might on the other hand be enough time to not only confirm the previous value, but even register a slight further increase if the PSA is indeed trending up.

    Subforum Topic (K) with studies on BCR and Adjuvant & Salvage RT8 is by far the most visited thread there, since (1) a good portion of men face BCR after primary treatment and (2) this is an area of PCa where no best practice has been established, with urologist and ROs often differing and even ROs are about evenly split on when to retreat. The well-known problem (and active area of research) is wanting to act early enough to offer maximum benefit from the RT, while not wanting to overtreat those men who would otherwise not go on to BCR with a PSA of 0.2.
    No worries - I don't know what hypofractionation is other than what you told me and didn't know it was something you could advocate for or against. But I'll ask the type of radiation and schedule at my next followup with the RO. I'm happy to educate the forum.

    Based upon the probablity of BCR according to several online calculators places me at a pretty low chance based upon my pathology so I wonder if the actual probabality is higher than generally stated in the literature and through on-line calculators. Either that, or I just got unlucky. Here's hoping my PSA goes down or stays the same at followup.
    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 Scan 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%
    Seminal Vessels: Negative, Bladder neck invasion: Not Identified, 4 Lymph Nodes: Negative
    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

  10. #20
    wtdedula said: "OK I'll ask about the dosage during my next visit. I got the impression he was going to go low and slow to reduce the side effects as he did indicate that."

    I was under the impression that radiation side effects are caused by the cumulative radiation dosage (Gy) rather than the radiation received in any single day's treatment. Does the daily treatment dosage impact the side effects after ALL the radiation therapy has been given?
    DOB: July 1947
    PSA: 2.0/2004 4.0/2010 5.8/2010 4.5/2012 5.6/2013 ALL Normal DRE
    5/18 PSA: 9.2
    6/18 PSA: 10.2 & 8.4% Free
    DRE small soft prostate w/no abnormalities
    6/28 3T mpMRI PIRADS 3
    18 cc gland=PSD 0.57 ng/cc
    0.32 cc lesion in apical PZ with subtle T2 signal hypointensity
    mild restricted diffusion of contrast into lesion prostate unremarkable intact capsule
    7/18 4KScore 34% Probability Gleason =>7

    8/03/18 Bx: Adenocarcinoma 6 of 13 cores ONLY L lobe
    T1c / Grade II / unfavorable intermediate
    extent of G3-G4 tissue far greater than indicated by MRI
    G6 (3+3) 70% LL Base 50% L Lateral Mid 20% L Base
    G7 (3 +4) 100% LL Apex 20% L Mid 60% L Apex
    8/15/18 Clear CT scan and Bone Scan
    RALP 8/23/18 pT3a, G7 (3+4), 20% involvement, SM+ (Focal 2mm G6), EPE(Focal G6)+, PNI+, LNI-, SVI-, LVI-
    7g Tumor 20x size in MRI & biopsy report & in BOTH lobes not just L as biopsy reported

    PSA Post Surgery
    10/3/18 0.021
    01/4/19 0.018
    04/03/19 0.022

 

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