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  • what to do now with Prostate Cancer?

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    Old 11-10-2019, 01:26 PM   #1
    DavidFriend
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    what to do now with Prostate Cancer?

    Prior to RP my PSA was 7.6 Biopsy revealed a Gleason 3+4 with extra capsular extension. and 50% involvement on the right side.

    I had a radical prostatectomy in 2016. PSA was undetectable after that. But by 8/17 it was .1 and 12/17 it was .1 again. In 6/18 it was .2 So Dr. determined doubling time as six months and I began taking Casodex and Lupron between 8/18-2/19. ALSO, from 8/31 to 10/31 I had 39 Radiation sessions. PSA on 10/31 as I was finishing up the radiation was .1 In June of 2019, with my testosterone back to normal, my PSA was undetectable. My most recent PSA in November 2019 was .1 again.

    Can anyone suggest what this pattern means? Or what I should do from here.

    THANKS SO MUCH FOR YOUR ATTENTION TO THIS!!

     
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    Old 11-11-2019, 01:18 PM   #2
    IADT3since2000
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    Re: what to do now with Prostate Cancer?

    Hi David and welcome to the Board!

    I’m sorry you are having to reconsider your situation after having paid your dues not once but twice already. Unfortunately, that sometimes happens.

    Two possibilities come to mind. The first is that there might have been some healthy prostate tissue that was not removed by the original prostatectomy, and that might be the cause of that PSA of .1. However, the fact that your PSA did go to “undetectable” after the RP suggests that is not the case. On the other hand, some urologists use a conventional PSA test to monitor patients after RPs, and some versions of conventional tests have a lower limit of sensitivity of “<0.1,” in other words, less than 0..1. Was that the case for you? If so, it is possible that you might have had a true PSA of, for example, 0.099 or close to it, which would have registered as “undetectable” as it was <0.1. If that were the case, then day to day variation in your PSA or in lab testing, even with the same test version, could tip the scale to a result of .1 instead of <.1. If “undetectable” was based on an “ultrasensitive” PSA test with a lower bound of sensitivity of, say, <0.05, <0.04, or <0.01, then day-to-day or lab variations would not have accounted for a result of 0.1.

    The second possibility is that you still have a small amount of cancer, perhaps still in the prostate bed, though that seems unlikely after radiation, or perhaps in a lymph node or distant spot. Thankfully there are some highly sensitive and specific modern scans that can often but not always pick up very small bits of cancer, even with a PSA as low as 0.1 for the most sensitive technology. However, they work better for most patients when the PSA is slightly higher, reflect ing a slightly larger cancer. I believe the most sensitive scan, Gallium (Ga) 68 PET/CT is not yet approved but is available at at least one site in the US and more widely in Europe, but the next most sensitive scan, known as the Axumin PET/CT scan, is now fairly widely available, as are slightly less sensitive scans such as C-11 choline and C-11 acetate PET/CT scans. Once the metastasis is located, spot radiation or surgery can be used to knock it out. Sometimes that results in a cure. Sometimes additional spots appear, like successive crops of dandelions growing in a lawn, but they too can often be treated and eliminated, curing some patients, and at least setting back the cancer.

    I hope this helps.

     
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    Old 11-11-2019, 01:46 PM   #3
    DavidFriend
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    Re: what to do now with Prostate Cancer?

    Thank you IADT3 so much for taking the time to reply with such useful information. I will print it and study it.

     
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    Old 01-08-2020, 05:32 PM   #4
    Steve135
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    Re: what to do now with Prostate Cancer?

    Davidfriend, While going through my PCa journey my doctor once said 0.1 is zero, pointed at my wife and said if we gave her a PSA test she might be 0.1! So simple searches on the web wll show lots of nay sayers about Prostate Specific? After RP there could be prostate tissue left that that might not even be cancer, but clean tissue? Just a thought stranger things have happen.

    For all the uncertainties about the PSA, at least we can be sure the name is accurate.

    Wrong. The protein that bears the name "prostate-specific" has also been detected in other organs, including the liver, pancreas, salivary gland, and breast (even in females). Only tiny amounts of PSA are present in these tissues. Still, purists might prefer the name Prostate Almost-Specific Antigen, while wags might suggest Perplexing Semantic Anomaly.
    steve d

    __________________
    Diag. 56 DOB 2/59 PSA 01/14 2.0 6/15 2.4
    Biopsy 6/15 5 Gleason Score 8
    RP 10/15 Path 54g 5x4.2x2.8cm 4+3=7 Tumor location quadrants Bilateral
    Extra-capsular extensions present,SV no invasion
    Vascular invasion none, PNI ,Multicentricity multifocal
    Margins NP lN's 5 neg pT3a,N0
    PSA 10/16 0.1 1yr 02/7/17 0.4 02/15/17 0.5
    Pet Scan 2/17 Neg PSA 03/17 0.6 Axumin trial 17.4mm BCR rt. SVB Casodex + Trelstar
    04/17 SRT (42)
    08/17 PSA 0.1 Last 6 uPSA 0.006 uPSA 2/19 0.030 2nd BCR 5/19 0.235 5/19 03.2 6/19 0.34 7/19 0.06 8/19 0.08 9/19 0.056
    10/190 0.08 11/19 0.07 12/19 0.07
    7/19 Trelstar, Xtandi, Zoledronic Acid
    12/19 (3) SBRT Iliac bone liasion

    Last edited by Steve135; 01-08-2020 at 05:34 PM. Reason: missing info

     
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    Old 01-08-2020, 05:45 PM   #5
    Insanus
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    Re: what to do now with Prostate Cancer?

    My thoughts is you have cancer that was outside the radiation field and the hormone therapy turned it off for a while. Your next step is imaging.

     
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    Old 01-09-2020, 05:42 PM   #6
    DavidFriend
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    Re: what to do now with Prostate Cancer?

    Thanks so much for getting back to me. It's upsetting to go through a RP and 39 radiations and still have a .1 PSA or should I say, still have cancer. I guess we'll see and the doctor wants at least a couple more PSAs before we consider androgen suppression medication. Thanks again.

     
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    Old 01-10-2020, 11:57 AM   #7
    Steve135
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    Re: what to do now with Prostate Cancer?

    DavidFriend, hang in there do your best in keeping away from that PSA anxiety each time. It was taring my wife and I both up, her more than me. Its sad to say as you progress for the better or worse you'll find you will be better receptive to all issues and results. Its best to read up on PCa in the most informational books posted on PCa boards by Walsh and Worthington. Knowing more than you need will allow you to ask the proper question at your visits now than the next. I still remember a doctor saying to us through this journey "it is was it is" ?
    steve d

     
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    Old 01-10-2020, 01:58 PM   #8
    DavidFriend
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    Re: what to do now with Prostate Cancer?

    Thanks so much Steve for taking the time to write.

     
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    Old 01-10-2020, 03:00 PM   #9
    IADT3since2000
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    Re: what to do now with Prostate Cancer?

    Here's a book I consider a key to unlocking success against prostate cancer, including recurrence. It is entitled, "The Key to Prostate Cancer" by medical oncologist Mark Scholz and 29 others. The book contains 6 chapters in Section IV, 43 pages long, which essentially deals with non-metastatic recurrence. One point made in the overview is that survival rates are generally very good, much better than for other major cancers; patients are more likely to die of natural causes than prostate cancer. Moreover, the overview chapter states that the treatment goal is cure (rather than just control or easing symptoms).

    Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 01-11-2020, 05:11 PM   #10
    DavidFriend
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    Re: what to do now with Prostate Cancer?

    Thanks so much for getting back to me, Jim. I will get the Sholz book.

    Hope all is well with you!!

     
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    Old 01-12-2020, 05:43 AM   #11
    Prostatefree
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    Re: what to do now with Prostate Cancer?

    Your PSA was probably never really undetectable. Unfortunately, people like to use that term. Your PSA was probably detectable below 0.1 all the time.

    For example, my brother used a more sensitive test and his first test after RP was 0.03. This shows his surgery failed. Six months layer his PSA was .05. He had radiation treatments soon there after.

    By testing with a <0.1 test you missing knowing your surgery failed at a cure. And, it was in error to say your PSA was undetectable. It is common language to misspeak about what is detectable and not detectable. Most men grasp at it as some thing to believe rather than understand how it is abused in this disease to mislead patients. I believe most doctors use this test to avoid explaining the distinctions around the next level of treatment.

    Would anything have changed for you if you had known immediately 3 months after the RP it had failed as a cure? Probably not. Maybe you could have retreated it sooner.

    It is mostly likely your cancer had already metastisized before the surgery. There is no way to have known this was possible with out more of your history before us, such as how long this has been going on. If surgery was not possible as a cure, you could have treated your cancer locally with radiation initially in lieu of surgery and avoided the trauma of two levels of treatment to reach this point.

    I don't say this to discourage you, but to share for others who may be similar to you and struggling with reading the tea leaves that is the diagnostic and treatment choice phase of this disease.

     
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    Old 01-12-2020, 11:54 AM   #12
    Gary I
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    Re: what to do now with Prostate Cancer?

    David...I'm in about the same boat as you, and I agree with your doc. You need a few more PSA blood draws to better understand what's happening.

    After RP, my PSA was 0.54 within four months. PSMA PET scan showed a one inch lesion on my otherwise empty prostate wall. After 39 sessions of SRT, my PSA has bounced around for the last 18 months. Three months ago it was 0.116; last week it's was 0.066. Unfounded BCR hysteria, IMHO, will do neither of us any good.

    I've read all the books, and probably a thousand medical studies, and there are NO clear answers. All I can advise is be certain you have a very experienced RO, maybe a PCa specialist MO, keep getting uPSA's, and follow their advice.

    The best book (bible) available is:

    Patrick Walsh's 'Surviving-Prostate-Cancer' 4th Edition.

    Best of luck, and keep us posted.
    __________________
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    Second 3T MRI 1/17
    RALP 7/17, G3+4, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over next 4 months
    DCFPyl PET & ercMRI @NCI - 11/17
    One inch tumor still in prostate bed
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    SRT, 2ADT, IMGT 70.2 Gy, complete 5/18
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    Old 01-13-2020, 05:05 AM   #13
    Prostatefree
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    Re: what to do now with Prostate Cancer?

    You can consider changing your testing to something more sensitive. You'll have more data points.

     
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    Old 01-13-2020, 06:18 AM   #14
    Michael F
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    Re: what to do now with Prostate Cancer?

    Hi DavidFriend! Very sorry to read your saga. Unfortunately, your story is unreasonably common. Fortunately, advances in imaging technologies and treatment modalities are on your side. Also, take a look at Gary I's history. He has been down a similar pathway and continues to do fine.

    The usual "suspect" in cases like yours is undetected lymph node involvement. Were there any LN findings listed on your Surgical Path Report?

    The immediate objectives to discuss with your MDs are:

    1) What is the exact, pinpoint location(s) of the remnant PCa?

    There are several clinical trials utilizing GA68-PSMA PET CT or MRI to locate PCa following BCR. Take a look at the NIH website:

    https://www.cancer.gov/about-cancer/treatment/clinical-trials/intervention/gallium-ga-68-labeled-psma-11

    e.g. the 5th trial listed is fairly local = MSK in NYC

    2) How can the remnant PCa be treated/cured?

    3) If Cure can not be achieved, How can metastatic disease be prevented?

    You have already experienced:

    - PCa diagnosis
    - RP
    - BCR
    - HT
    - SRT
    - BCR again

    and have not been cured (only an MD can confirm this)! This is extremely frustrating!!! Somewhere, something was missed. Hoping it can now be detected and eradicated.

    By participating in an imaging trial, you will also receive expert MD advice on the best action steps moving forward.

    If you are not 100% confident that your current MDs are managing your case perfectly, then seek a 2nd expert opinion. My suggestion would be Dr D'Amico at Dana Farber. Touch base with Gary I for his experience getting a 2nd opinion at D-F.

    Stay strong and optimistic! We are pulling for you to achieve permanent Cure!

    MF
    __________________
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free =13%)
    Jan '12: Biopsy: 1/12 = G7 (3+4) & 5/12 = G6
    March '12: Robotic RP: Left: PM + EPE => MD excised additional adjacent tissues
    Pathology: Gleason (3+4) pT3a pNO pMX pRO c tertiary pattern 5 / Prostate Size = 32 grams / Tumor = Bilateral: 20% / PNI: present
    uPSA Range: 0.017 - 0.032 at 94 Months Post Op: Mean = 0.023 (n = 23)
    LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%) ED = present

    Last edited by Michael F; 01-13-2020 at 08:01 AM.

     
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    Old 01-13-2020, 09:43 AM   #15
    Gary I
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    Re: what to do now with Prostate Cancer?

    As always, my friend Michael's advise is clear and spot on.

    There is not an RO anywhere more qualified than Tony D'Amico, at Dana Farber and Harvard. I went to him for a 3rd opinion, and he set my mind to rest.

    If you need a number, PM me.
    __________________
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    Second 3T MRI 1/17
    RALP 7/17, G3+4, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over next 4 months
    DCFPyl PET & ercMRI @NCI - 11/17
    One inch tumor still in prostate bed
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    SRT, 2ADT, IMGT 70.2 Gy, complete 5/18
    PSA 0.066 1/20

     
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