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Thread: Radiation Therapy is Inevitable - so why Wait?

  1. #1

    Radiation Therapy is Inevitable - so why Wait?

    I met with my MO today for my 11-month post RP discussion about the µPSA that has gone from 0.018 to 0.022 to 0.028 (Jan 4, Apr 3, June 26).

    He states I have "recurrent PCa" and radiation therapy is a given, the only question is when?

    I told him that I agreed with his analysis that the increasing PSA values do indicate that some PCa cells remained after my August 23, 2018 RALP.

    My BIG question is:

    - What is the risk in waiting a year or two to begin Radiation Therapy (RT), assuming my PSA scores do not increase at a much higher rate, in order to benefit from improving technology, which might increase RT efficacy and reduce side effects.

    I told him I was commited to starting RT with a PSA < 0.1 but would like to wait as long as possible.

    He felt that was a reasonable approach but did want me to understand the risk of the remaining PCa sending out a cell or two, which find a new home in my vertebrae or pelvis, and then come back to hurt me in five or 10 years as Metastatic Prostate Disease.

    My MO did say there is "no rush - no urgency" for me to begin RT and in fact I could most likely wait a couple years. But, he asked - "Why wait if it is inevitible? Why not hit the remaining PCa hard and be done with it?"

    He does not think any new RT technology or breakthroughs will occur in the next three to five years and therefore waiting on technology is some risk with little potential reward. He set me up with an appointment with a "very conservative" RO, with whom I can discuss all the issues.

    The recommended RO frequently delays RT in cases where my MO thinks it should begin immediately.

    I asked him about Circulating Tumor Cell (CTC) analysis to see if my remaining PCa is sending out little systemic invaders. He felt that a 0.028 PSA means there is so little PCa that CTC will not find anything and would be of no benefit. I'm not sure I understand that because my reading of CTC analysis literature is it can detect one PCa cell per 7.5 ml of blood. Many articles report CTC analysis to count/detect between 81% and 94% of the CTC in blood drawn from Metastatic Disease patients.

    I then asked about Decipher genomic testing to determine the aggressivness of my remaining PCa. He does not think Decipher adds any useful information in my situation (SM+ EPE+ PSA steadily increasing after RALP) because it only samples tissue from WITHIN the prostate capsule. It is the PCa cells that were strong enough / aggressive enough to escape the prostate capsule, which I have to worry about. He believes that those escaped cells (in the Surgical Margin and Extra Prostatic Extension) probably have different genomic expressions than the cells that were not able to escape. Therefore, Decipher is only a statistical guess based on limited data from my SPECIFIC case.

    I pointed out that no patient (ME!) with a CAPRA-S score <7, SM+, EPE+, pre-RP PSA <20 and a Decipher score <0.2 had ever suffered Metastatic Disease and even with a Decipher score of 0.4 there was only a 1 in 25 chance of BCR in 10-years. SO - IF I had a Decipher test I could make some pretty safe assumptions about my prognosis, even with a rising µPSA if the test comes back well less than 0.4.

    He knew all about those nomograms and research results but pointed out that I was an individual and was a 1 chance in 25 of suffering Metastatic Prostate Disease in 10-years worth the risk when there is only a 1 in 10 chance of suffering any negative, significant side effects from RT, which would virtually guarantee my complete cure? Particularly if we agree that RT is an inevitible treatment for me, even it is five-years from now!

    We ended with the agreement that:
    - I will have another µPSA in three-months
    - I will meet with the Radiation Oncologist ASAP
    - I will consider getting a 2nd MO opinion about the need for RT from Mayo or MD Anderson
    - I will pick a PSA value, well less than 0.1, and committ to beginning RT when I hit that value
    - I will talk with my MO again in late October, which will be 14-months post-RP
    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
    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
    06/26/19 0.028

  2. #2
    Top User
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    If it is inevitable then proceed, imo. Waiting (time) only serves the cancer.

    Early detection early treatment all the way down until there is no compelling reason to treat.

    Your PSA is not only steadily rising as evidence of BCR, it is gaining velocity.

    If you are healed then the younger you are, if you are going to do this, the better will be your recovery.

    Waiting is clearly a choice as is acting. You say you want to wait. What is inspiring you to wait? Over treatment? Then consider delayed treatment of an invetiable treatment puts you at higher risk of more treatment.
    Last edited by Another; 07-10-2019 at 11:34 PM.

  3. #3
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    OTS,

    You've obviously had a good and deep conversation with your MO. I believe you'll have a better idea on the direction you should take after your next PSA. It will either dribble back down to around 0.02 or move a little higher and breach 0.03. I'm not a statistician but it does look like it's starting to trend upward - albeit slowly. There has been a study or two done regards when to start SRT and at least the one I read suggested pulling the trigger at or before a PSA level of 0.030 has some long term benefits. I'm personally not looking forward to radiation treatment but I've decided that's going to be my trigger point (0.030). That said, my pathology is somewhat worse than yours and I have a high risk Decipher score kicker so I'm definitely not waiting for a higher PSA decision point.

    I agree with your MO as well on the unlikely probability of some new, lower risk radiation technology hitting the market within the next couple of years. First there's research (likely ongoing), then later stage trials to determine efficacy, then working with the radiation equipment manufacturers to implement, FDA approval, and on and on. The current technology is much better than what was available 10 years ago but it could be another 10 years for another significant step improvement.

    Your point on CTCs is well taken. I'd like to know how many CTCs I have in my bloodstream right now, too. I know they have created stratification charts based on the number of cells per 7.5ml but I don't recall exactly what level at which they become concerned - although I believe it's 3 cancer cells/7.5ml.

    Lastly, I think your agreement/strategy that you and your MO have decided on is well thought out - in my humble opinion.
    Last edited by IndyGuy; 07-10-2019 at 09:08 PM.
    DOB: 10/1962

    6-01-15 PSA 2.5
    Having urination flow issue in first half of 2018. Flomax 6/1-6/21 - no help.
    6/25/18 PSA 14.25; Cipro 14 days
    8/1/18 PSA 17.44; rec. Urologist appt
    8/15/19 First Uro appt. + for bacteria. Cipro 4 weeks
    10/2/19 PSA 22.4; Still + for bacteria. Antibiotics 4wks
    12/28/19 PSA 27.5
    1/15/20 Biopsy results 6/12 cores positive - all left side; GS 4+3
    1/18/19 Bone scan and CT scan both negative
    2/15/19 Di Vinci RP
    2/18/19 Path report pT3a, GS 4+3 (60%+35%) 5% GS5, SM +, EPE +; LVI -, SVI -, LNI(9) - ; Tumor size: 3.5cmx3.5cmx1.5cm; single foci left side; right side nerves spared; SM+ at apex limited <1mm; benign prostatic cells at spared right nerve bundle. Prostate size 45gm.
    Cath out at 7 days: 100% continent with some ED; ok with 10mg Cialis.
    Decipher 0.73

    PostOp PSA testing:
    3/26/19 (6 weeks) 0.033
    5/10/19 (3 months) 0.010
    8/02/19 (6 months) 0.019
    8/30/19 (7 months-recheck) 0.024

  4. #4
    I can see going ahead with RT if you are certain (1) that your PSA is rising and will probably continue to. Some men have persistent but stable, low, and effectively benign PSA. And (2) that the source of the rise is in the prostate bed. Even keeping in mind your doc's opinions about Decipher, I see absolutely no reason not to have the test before starting any new treatment, especially if your insurance will cover it. IF it should come back High Risk, then perhaps you would want imaging to exclude mets: there may be little point in irradiating the prostate bed and very close lymph nodes if the source is elsewhere. Or if you do go ahead with RT and are high risk, your RO might want to ask about widening the RT field (in one study about 25% of men who had SRT and went on to metastatic PCa had positive pelvic node(s) that were were outside the standard field of radiation.) If Decipher comes back with Low or Avg. Risk, it gives support to the conclusion that the remaining cells are in situ. The accompanying GRID report, while officially "not for decision-making" has lots of information and can possibly give you hints about, and confidence in, a decision. Not knowing your genomics after doing so much research about where you stand seems a bit illogical to me.

    Looking at your numbers, I'm not sure your PSA is currently high enough to qualify as persistent PSA -- do some Web searching. If you are Low Risk on Decipher, it would give you more time and data to see what your PSA will do. I'm not saying to wait years, but just gain a little more clarity about what's actually happening.

    Dems my thoughts
    Last edited by DjinTonic; 07-10-2019 at 09:30 PM.

  5. #5
    There is an advantage to delaying RT, even if its "inevitable".


    The doctor asked - "Why wait if it is inevitible? Why not hit the remaining PCa hard and be done with it?"


    The answer is if you delay the treatment, you are also delaying both the side effects of the treatment and the costs of it in both time and money. Further, you're 72 years old. Even if you are "done with it" in regards to PCa, you will still have other ailments and other doctors to see. After you receive radiation, you'll be on an accelerated schedule in regards to screening colonoscopies.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  6. #6
    Your MO would be negligent if he did not recommend treatment. If you decide not to take his advice, it is on you.

    Yes, you are not going to live forever and may die of something else first, these days you may live into your nineties if cancer doesn’t take you out first. Delaying reduces chance of success.
    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 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)
    9/10/2019. <.02. (198 days)

    ADT - 6/3/19
    ART - 8/5/19

  7. #7
    I believe the term recurrent cancer your doc used refers to cancer detected after a period during which it wasn't. Whether your PSA is increasing IMO has not been established beyond doubt, and if you are headed into BCR, it would be from remaining healthy and/or cancerous cells. RT isn't an after dinner mint, or we'd all have it tagged on after surgery. Be careful interpreting small uPSA number; I don't think we know what inconsequential fluctuations are, or if we can apply velocity calculations normally used on much larger numbers.

    Your plan sounds good.

    Djin

  8. #8
    OTS, as this conversation is "above my pay grade", let me just offer a sobering prediction (I know that you are fond of such stats).

    A couple of months ago, I saw a post on some forum that MSKCC had a new PCa nomogram. So, I tried it, and entered in all my data.

    It returned that, in 10 years, I had less than a 1 percent chance of dying from prostate cancer. Yay! The next line said that i had a 36 percent chance of being alive in 10 years. And, that was assuming no other health conditions.

    That really hit me. At 75, I am a very agile swing dancer, hiker, and jet ski enthusiast. Also, have a passionate same-age gf. BUT, the end is apparently near, like it or not.

    Play that as you may....it would inform me to delay more treatment until absolutely necessary, and book every "bucket list" trip NOW.

    Just my thoughts...
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
    Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
    PSA 4.4, fPSA 24, PHI 32
    Hopefully, I can remain untreated. So far, so good.

  9. #9
    Top User garyi's Avatar
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    Quote Originally Posted by DjinTonic View Post
    RT isn't an after dinner mint....
    LOL...and when combined with hormones, the mint gets real bitter.

    Profoundly good comments and advise from Djin and ASA.
    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
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor still in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    Radiation Procitis, and Ulcerative Colitis flaired after 20 years
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19, .081 9/19
    We'll see....what is not known dwarfs what is thought to be fact

  10. #10
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    Quote Originally Posted by ASAdvocate View Post
    OTS, as this conversation is "above my pay grade", let me just offer a sobering prediction (I know that you are fond of such stats).

    A couple of months ago, I saw a post on some forum that MSKCC had a new PCa nomogram. So, I tried it, and entered in all my data.

    It returned that, in 10 years, I had less than a 1 percent chance of dying from prostate cancer. Yay! The next line said that i had a 36 percent chance of being alive in 10 years. And, that was assuming no other health conditions.

    That really hit me. At 75, I am a very agile swing dancer, hiker, and jet ski enthusiast. Also, have a passionate same-age gf. BUT, the end is apparently near, like it or not.

    Play that as you may....it would inform me to delay more treatment until absolutely necessary, and book every "bucket list" trip NOW.

    Just my thoughts...
    Here is the risk. If it does go to bone it can present in 5 years making the last 5 years of the remaining 10 awful ending the possibility of dying of something other that PC. The MO was quite specific and clear this was the risk he is attempting to protect him from with his recommendation.

    Be clear, the doctor of the moment, a MO, is recommending treatment now and OTS is negotiating a "reasonable" delay of an inevitable cancer treatment to avoid potential side effects of treatment. The real risk here is being so reasonable.

    "The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man." George Bernard Shaw

    With what you offered concerning his age and life expectancy one can reasonably argue the long term side effects of RT are no longer an issue rendering the consideration down to an almost certain cure vs short term side effects of RT. Doesn't your advocacy for modern RT dispells this as a serious consideration?

    If history is to be our guide review OTS' original PSA history and how adamantly he negotiated to avoid a biopsy. Here he stands on the brink again with a much more reasonable and knowledgable argument, but one none the less. The more things change the more they stay the same. In his own words, he is considering a delay of an inevitable cancer treatment. Denial and delay are the two demons of cancer.
    Last edited by Another; 07-11-2019 at 11:29 AM.

 

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