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Thread: Things I wish I had known about being diagnosed at a young age

  1. #21
    Quote Originally Posted by KarlEmagne View Post
    I agree RP kind of s*cks, but is worth the trouble because you get a second chance of cure with RT if cancer cells remain after RP. If RT fails, that's it, can't be done twice same place.
    Karl, There are several non-surgical treatments available in the event of a recurrence after primary radiation. These include cryotherapy, HIFU, both types of brachytherapy, and others. Also, both SBRT and Protons are being tried for this salvage work.

    https://pcnrv.blogspot.com/2017/09/f...for-radio.html
    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.

  2. #22
    Moderator Top User HighlanderCFH's Avatar
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    Quote Originally Posted by Sw1218 View Post
    REFERRING TO SALVAGE SURGERY AFTER FAILED RADIATION...
    i've been told by experts that's not true at all. what R your thoughts on that?

    SW, to my knowledge, it pretty much IS highly unlikely that salvage surgery can be done if radiation fails as the primary treatment. There are a couple of things to note with this:
    * one member said his doctor told him that surgery with an irradiated prostate is like working with a rotted peach
    * a lot of scar tissue builds up around the prostate from the radiation (at least with EBR), which makes for VERY difficult surgical access

    Thus, while it is not completely impossible to remove an irradiated prostate, it is extremely difficult and dangerous -- and very few surgeons will attempt it.
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  3. #23
    Moderator Top User HighlanderCFH's Avatar
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    Quote Originally Posted by Another View Post
    Sw1218, just for clarity, your PSA history is considered a steady rising number indicative of cancer. It is not a bouncing around number indicative of prostatitis or BHP. It never has returned to original numbers. If you were to graph your numbers they represent an increasing trend. The minor deviations are natural. The overall trend is not. Never was. The first 5.5 at your age was all you needed to know.

    The OP makes a very valuable point about age. This cancer typically begins much later in life for those who will survive it. When it starts early it gives itself more time to develop into something more serious or indicates it is beginning as a more serious cancer. It is also harder to find by biopsy. Meaning more biopsies. You had one before you found it with an unacceptable delay between. There is one here who had 9 or 10 biopsies.

    I am assuming you were never in a professionally managed AS program. If so they would have had a confirming biopsy within a year of the first instead of waiting 4 years. They would never have ignored your PSA numbers.

    Being blunt, your history is an example of what a young man should not do.

    You now know your PSA is s reliable indicator of the progression of your cancer. It was dismissed by you for belief in the much less reliable information of a false negative biopsy and a false negative MRI. This is classic denial and delay.

    Your PSA and age was your red flag and an aggressive diagnostic campaign to find the cancer is what should have been pursued. Instead, the false negative biopsy and false negative MRI we're used to avoid more aggressive biopsy strategies. All the time your age and PSA screamed cancer.

    You also tried diagnosing with antibiotics which is bad medicine. Everything in your signature indicates self management and not professional care.

    I say all this not as a criticism, but to reinforce a way of thinking that still persists in your posts now. You are apparently now in professional prostate cancer care and you are still on the internet asking basic questions about treatment you should be far beyond asking and be doing or have already done. You have been at this for 5 years and your approach persists.

    My concern is you have been a difficult patient to your own detriment. I suggest you start listening to your doctors and take treatment action. Any treatment action. Preferably, what your doctor(s) recommend.

    You may have a problem with your doctors if you have trained them to assist you in your denial and delay. Doctors are human and if their protocols are persistently over ruled or dismissed by a self managing patient they will mentally move on to patients that accept their efforts. You may have to work hard to convince them you are now serious about dealing with this.

    I suggest you also be screened for depression. The inability to take meaningful action or be effective is one sign of depression. The operative word is effective. Running in circles is taking action. It's just not effective.

    Something still seems outside your profile and that is the second opinion of G6. It fits in your profile as occurring after your first biopsy. It seems more likely the first biopsy is upgrade by a second opinion to G6. It seems less likely a G4+3 is downgraded to a G6. Especially a G4+3 graded by an Emory lab. This screams mistake somewhere.

    Here is the sad news. You had early detection which is the holy grail of cancer. Now you don't. Your diagnostic phase did not go well and you have lost a precious opportunity you had. Your job is to accept this, not to; blame, defend, or seek and debate alternatives. I suspect you are out of many options you may have had. The problem is your head is probably still in the same place as before.

    Are you capable of managing your treatment phase? Can you seek help and intervention in your case management? You need an advocate that is clear. You are not, still, after all these years.

    If you continue to watch and wait you will continue to lose options as you already have. Surgery may no longer be a good option because the cancer may have advanced beyond the prostate. Your PSA numbers and G score makes this very likely. You are now probably up next for hormones and radiation. If it helps your decision making, this is your best option from a stranger on the internet who is not a doctor.

    Another, you are without a doubt one of the forum's most treasured contributors. The words and phrases you choose, on the other hand, tend to get a bit too harsh. I would not suggest that you stop offering constructive criticism, but I do believe that you should tone things down a bit. In looking at all the examples I put up above in red, you really laid it hard on SW.

    There are things he should have done -- or should not have done, etc -- and it is fine to point that out. But hopefully not with the sharp barbs that were used to deliver the messages.

    If you can try and be a bit more soft -- while still offering your "tough love" style of criticism -- I would be most appreciative.

    Thanks again, however, for all of your valuable posts and we look forward to your future contributions.

    Thanks much!
    Chuck
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  4. #24
    Quote Originally Posted by ASAdvocate View Post
    This study supports Duck2's statement about 52 percent BCR for Gleason 7, 20 years after RP.

    https://medivizor.com/blog/SampleLib...state-surgery/
    The common propaganda is men treated early are 90% curable.

    75% in this study were stage II and more than half were G6. The average age was 84 at 20 years post surgery. Push things out to 94 and BCR wound be ~70%.

    I have come to believe the only real cure for prostate cancer is to die of something else before the cancer causes you problems because living long enough = BCR.
    Last edited by Duck2; 05-19-2019 at 02:43 PM.
    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

  5. #25
    Let's not forget that not all men go from BCR to clinical recurrence, and many of the men will prevent recurrence by having SRT if their PSA goes up. Some of the men will be in their 90s at 30 years post-op, and even if BCR occurs, these older men can watch and wait at that point and treat systematically if clinical recurrence occurs (average time from BCR to clinical signs, IF that occurs is about 5 years). Genomics can help identifying those men whose PCa is at risk for metastasizing. Some men have prostate-confined PCa manged for many years with HT. If your PCa doesn't metastasize, you will die of something else.

    Djin
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3 -
    7-05-13 TURP (90→30 g) path neg. then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 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 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day check)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  6. #26
    Top User
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    Understood.

  7. #27
    Regular User
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    Now that I have gone through the process, the biopsies, the RALP and now with a PSA < .001.
    I tell everybody (have a poster in my office - have you been tested) and even advocate for earlier PSA testing. It really bothers me that a conversation about ability to pee, sex, ED and less then normal experience with your genitourinary track is taboo. I am not a DR, but I would NEVER do active surveillance, get it out as quick as possible.
    PSA 4.8 07/25/2010
    PSA 6.2 10/08/2010
    PSA 4.4 12/29/2010
    PSA 4.7 01/31/2012
    PSA 5.4 07/02/2018
    18 Core Biopsy 9/12/2018
    2 out of 18 cores positive
    -PROSTATE, RIGHT APEX, NEEDLE CORE BIOPSY: PROSTATIC
    ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1), INVOLVING 1 OF
    3 CORES (10%)
    -PROSTATE, LEFT MID, NEEDLE CORE BIOPSY: PROSTATIC
    ADENOCARCINOMA, GLEASON SCORE 3+4=7 (GRADE GROUP 2, 40% PATTERN 4)
    INVOLVING 1 OF 5 CORES (20%)

    Post-op Path
    Gleason 3+4 30% pattern 4 grade group 2 confined to prostate
    no evidence of lymphovascular space invasion, no EPE, no seminal vesicle involvement
    all margins negative
    bladder neck negative for tumor
    % of prostate involved 25%
    pT2,pNO
    weight 57grams

    3 month post-op PSA <.01

  8. #28
    If you are age 85, AS is an option.
    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

  9. #29
    Quote Originally Posted by DjinTonic View Post
    Let's not forget that not all men go from BCR to clinical recurrence, and many of the men will prevent recurrence by having SRT if their PSA goes up. Some of the men will be in their 90s at 30 years post-op, and even if BCR occurs, these older men can watch and wait at that point and treat systematically if clinical recurrence occurs (average time from BCR to clinical signs, IF that occurs is about 5 years). Genomics can help identifying those men whose PCa is at risk for metastasizing. Some men have prostate-confined PCa manged for many years with HT. If your PCa doesn't metastasize, you will die of something else.

    Djin
    One of the common errors in logic on this site is prostate cancer is primarily regional and regionally treatable, but systemic spread from what appears Stage II occurs.
    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

  10. #30
    Quote Originally Posted by Duck2 View Post
    If you are age 85, AS is an option.
    Actually, that's not really true. 85 year old men aren't usually screened for prostate cancer unless they are symptomatic.
    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

 

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