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

  1. #21
    Quote Originally Posted by wtdedula View Post
    ....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....
    Hi Tim! Not sure if any useful benefit can be derived by a 2nd evaluation of your Path slides. However, ask the CC MD(s) if you should have a Path Sample sent for Genomic testing/evaluation. The result could help determine at what PSA level should be the trigger to commence SRT & if HT should be included. We emphatically hope that it never approaches the trigger point!

    MF

  2. #22
    Senior User
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    Quote Originally Posted by OldTiredSailor View Post
    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?
    Hmmm ... You could be right as I have no idea. It was just my assumption. If you heard that from an authoritative source, you're probably right. My doctor seemed to downplay the side effects. Said RP causes 1-2% to have incontience and radiation causes an additional 1-2% have incontinence. What this tells me is that only a max of 2-4% have incontinence with both RP and radiation which to me sounds pretty low.
    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.

  3. #23
    Senior User
    Join Date
    May 2017
    Posts
    209
    Hello All;
    Just thought I'c mention that I had another PSA test last week. It came back same as previous at .05. But that test was done a little earlier than I planned due to needing bloodwork for a complete physical last week. So ended up being only 3 weeks and 1 day apart. I had originally planned on taking the test a bit later (Tomorrow actually) in preparation for Tuesday's appointment with the Radiation Oncologist. So I'm guessing he'll want to wait until it rises somewhat more (Which perhaps it won't - fingers crossed). At Tuesday's meeting, I'll suggest he schedule monthly PSA tests from now on.

    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.

  4. #24
    Experienced User
    Join Date
    Nov 2017
    Posts
    67
    Hi Tim,

    First of all I want to wish you good luck in this process. It sounds like you are doing everything right, and that's about all we can do.
    Secondly, I start my salvage radiation on the 26th, and from what I am being told and what I am learning here and elsewhere, the radiation process is precise enough today to avoid serious side effects for most people. I am feeling reasonably confident about the process. My only concern is, as you know, they want your bladder "comfortably full" for the radiation. I don't know about you, but when my bladder is full, I am not comfortable until I empty it.

    Eric

  5. #25
    Hey wt, you may want to take a look at my latest thread ( maybe you have): Completed SRT. I had very minimal side effects.

    My RO wanted to see a definitive PSA rising trend or hitting .2 on a single digit (which would be .15 on the double digit) before commencing RT.

    If you look at my signature, you see both a single digit and a 2 digit result. That is because my primary care doc did a uPSA whereas my uro and RO wanted only a standard. I kept doing both because I wanted the 2 digit after the initial 2 digit showed .06. The accompanying single digit showed .1 which is what I expected it to show. The initial .06 with a 2 digit had a matching .1 on the single digit. After being undetectable on a single digit, my RO said he would not consider treatment at this point. 3 months later the 2 digit PSA was .07 and given that the error range on the 2 digit is .02, this was not necessarily a rise. 3 months later the 2 digit showed .010 which is outside the error range, so showed a definite rising trend. The RO then told me I could start now and do 39 sessions or we could wait until it hit .2 (which would have most likely been in 6 months based on the rate of rise) when I would qualify for a phase 3 hypofractionation trial where it would only be 25 sessions.

    Hypofractionation is a higher dose each treatment. The total amount of radiation is the same. It's just 5 weeks instead of 8.

    I chose now because the timing was better and I just wanted to get on with it.

    Anyway, I wouldn't sweat the wait. My RO was up on the latest info and told me the results start to go down after you hit (either .3 or .5, I forget which) and above and go down significantly when you hit 1.0.

    As for ADT, he wanted me to have ADT. I wasn't sure I wanted to do that. My RO told me it may give me maybe a 5% better chance of eradicating it with my pathology, but also said I was in the gray area where it may or may not help. The choice was mine. I went back to my uro and asked him. His advice was that if you just do radiation, it will treat the prostate bed and surrounding pelvic area. If some cells escaped further than that, the radiation would not get them, but the ADT would. It is only for 6 months, 1 shot. So I went with it. Maybe it helped, maybe not, but I didn't want to look back and say "if only I had", because the alternative is being on ADT the rest of my life.
    There is no right or wrong decision for treatment. Make the decision you are comfortable with and can live with and not second guess if all does not go optimally.

    6/2016 PSA 5.1, negative DRE
    6/2016 Urologist PSA 6.0, %free = <10% chance cancer, negative DRE
    12/2016 PSA 7.7, %free = 50% chance cancer, negative DRE
    2/2017 biopsy Bostwick 5/12 3+3, perineural invasion. Hopkins 5/12, 4 3+3, 1 3+4 (5% 4), perineural invasion
    5/17/2017 Open RP by Dr Alan Partin - Hopkins (5500+ prostate cancer surgeries, open & robotic)
    5/2017 Pathology 3+4, T2x, +margin (6mm, 3+3), organ contained except unevaluable at +margin, moderate tumor extent
    seminal vesicles, lymph nodes all neg
    Age: 62 @ surgery
    8/2017 PSA < .1
    11/2017 PSA <.1
    5/2018 uPSA .06, standard .1
    8/2018 uPSA .07, standard .1
    11/2018 uPSA .10, standard .1
    12/29/2018 6 month Lupron shot
    1/22/2019 start SRT, 39 treatments, 5 days per week

  6. #26
    Quote Originally Posted by DavefromMD View Post
    As for ADT, he wanted me to have ADT. I wasn't sure I wanted to do that. My RO told me it may give me maybe a 5% better chance of eradicating it with my pathology, but also said I was in the gray area where it may or may not help. The choice was mine. I went back to my uro and asked him. His advice was that if you just do radiation, it will treat the prostate bed and surrounding pelvic area. If some cells escaped further than that, the radiation would not get them, but the ADT would. It is only for 6 months, 1 shot. So I went with it. Maybe it helped, maybe not, but I didn't want to look back and say "if only I had", because the alternative is being on ADT the rest of my life.
    Prior to my RALP in August 2018 I had two very long conversations with an highly experienced older RO who runs a state of the art private radiation facility. We also communicated, via e-mail, daily for a week and he sent me many links to current research. His attitude about ADT for me, IF I chose radiation therapy rather than surgery was exactly the same as Dave describes. He said there was no clear cut guidance about ADT or even HT with my August 2018 Biopsy numbers. He too suggested I should try it for 6-months and if I remember correctly, get the first shot 3-months before beginning radiation.

    He was not real strong on his opinion and said he could easily understand not doing ADT or HT. Everything he told me and wrote to me agrees with what Dave said.
    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

  7. #27
    Senior User
    Join Date
    May 2017
    Posts
    209
    Quote Originally Posted by enock View Post
    Hi Tim,

    First of all I want to wish you good luck in this process. It sounds like you are doing everything right, and that's about all we can do.
    Secondly, I start my salvage radiation on the 26th, and from what I am being told and what I am learning here and elsewhere, the radiation process is precise enough today to avoid serious side effects for most people. I am feeling reasonably confident about the process. My only concern is, as you know, they want your bladder "comfortably full" for the radiation. I don't know about you, but when my bladder is full, I am not comfortable until I empty it.

    Eric
    Hi Eric;
    Just curious, at what PSA value did you chose to start your SRT ? My RO said that he has some patients that start it immediately following surgery (even if undetectable) if they have a positive margin, and others start at the first sign of a rise.

    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. #28
    Senior User
    Join Date
    May 2017
    Posts
    209
    Thank you very much, Dave, and Enock, and OldTimeSailor;
    All of you have provided such great advice regarding Radiation and ADT. As I mentioned earlier my RO doesn't want to put me on ADT as he said he doesn't think I need it and he said it's not worth the side effects (presumably in my case).

    I just made an appointment with a Urologist who specializes in Prostate Cancer to replace my surgeon (For followup and for advice on BCR options) who left the clinic mysteriously. Only two problems - first his office said he needs to view my medical record before scheduling an appt. so I suppose it's even possible he will reject me after he sees I had RP already. Also, he's a very popular doctor and according to his biography, one of the best doctor's in America so even if I am able to snag an appt, it is likely I may be waiting quite a while, perhaps even longer than I comfortably want to delay SRT. We'll have to see how this pans out in the next few days when his office gets back to me with or without an appointment.

    Also, I had another appointment with my RO today and since I'm holding at a PSA of .05, I said I wanted to wait another month and then test PSA again to see what it's going to do. Another reason for me waiting is that I have a number of big events at work in April and would like to get those over with before beginning SRT. My RO said he's comfortable with me waiting another month to see what my PSA does.

    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.

  9. #29
    Senior User
    Join Date
    May 2017
    Posts
    209
    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
    Hi Djin;
    I saw my RO today and thought I'd update you on some of the questions you wanted me to ask. By the way, I want to mention that I really like him as he's very comfortable to talk to and is always happy to answer my questions.

    Today I asked him about imaging tests and he said that he would take images of the area every time during treatment but this is only to position the beam, not to detect cancer.

    Today I asked about imaging tests to find out where the cancer actually is and he responded that they wouldn't do any good because the cancer is so small and you wouldn't see anything.

    Today, I asked about the type of radiation. He responded Intensity Modulated Radiation and he said it uses photons which most cancer centers use. He said that only a few cancer centers use protons but those machines are very expensive.

    He said the dosage he uses is 7000 clyg (Unsure of the units since his writing is a bit difficult to read but the 7000 is correct), 35 factions. He said this is the standard therapy used by the Cleveland Clinic and other cancer centers may have different protocol.

    You didn't mention it but I was curious so I asked him about the potential for secondary cancers being caused by SRT and he said the potential is there but the chances are extremely small. He cited a percentage which I can't recall but I do recall it was an extremely small percentage. He said he himself has personally not had anyone that he treated develop a secondary cancer but he has heard of several breast cancer cases develop secondary cancers and he has heard of a few cases at a conference he attended.

    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.

  10. #30
    Tim, FYI, the unit used is usually centigray, cGy (100 cGy = 1 Gy), so the total dose will be 70 Gy (or 7000 cGy). Waiting another month for PSA info makes good sense IMO; you have your plan all ready! That you have a good RO that you like and trust is very important.
    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

 

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