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Thread: New member, new worries.

  1. #1
    Newbie New User
    Join Date
    Mar 2019

    New member, new worries.

    Hi all. I knew this was gonna be so confusing.

    I would appreciate advice from you pros.

    57 years old, good health. My Prostate has always been enlarged. Iíve always had frequent urination. I remember road trips in my late 20s early 30s where I had difficulty holding it for 2 hours.

    First PSA test was 10 years ago age 47, 3.2. Nobody seemed concerned. Itís always been 3.2 - 3.6. A year ago it was 4.4 right after monumental stress after my Mom passed away. DRE normal but enlarged, GP said prostatitis - antibiotics then retest was 3.9. September 2018 it was 3.8.

    Massive stress again since then, including an ER visit for diverticulitis mid February. Serious antibiotics cleared that up, but my next PSA test was mid march, and I had only felt over the diverticulitis for a week prior. Two days before PSA I was peeing like crazy, much more than usual. PSA came back 5.2 and that has me spooked. I also lost 20 lbs since September PSA, so perhaps September PSA was higher than it seemed due to increased weight hiding it.

    I know at this point it can be anything. Stress, prostatitis, PCa, UTI, etc. I still felt pretty inflamed from the diverticulitis just a week before the test. I also had an infected tooth at the time. Had a root canal today. Who knows how much inflammation Iíve had in my body from those two things at the time of the test.

    And yet I know, I shouldnít be ignoring those numbers. I donít think my GP will know what to do. How do I find a great urologist? I didnít even get free PSA on this last test but in September it was 27%.

    Iím scared of a biopsy just because Iíve been reading that infections, while not common, can get quite serious. I read somewhere that on an individual basis the risk is as high as 14%. Plus theyíre only 70% accurate, is that correct?

    If itís urologist time how do I find a good one? What about this 4Kscore test?

    Iím confused and scared and feel I need to learn a lot rather than rely on my GP. Any pointers would be appreciated.

    Thanks. Man you guys are troopers.

  2. #2
    There is a good chance that you don't have PC at all. PSA is not prostate cancer specific. All that diverticulitis and prostatitis can cause trauma to the urinary system and release more PSA.

    If you don't trust your PCP's recommendation for a urologist, you can certainly call the major academic medical center near where you live and make an appointment there. You might need a new PCP if you don't trust him to do what he does.

    Biopsies do carry a risk of infection, but there is a new method called the "Precision Point" system which doesn't approach the prostate through the rectum and carries a lot lower chance of infection. Its only in a limited number of locations now.
    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

  3. #3
    Newbie New User
    Join Date
    Mar 2019
    Appreciate the reply. I agree that thereís been enough trauma down there that it could be a factor. I guess finding a good urologist is key.

    Iím just a bit skeptical that too many act on rote - ďHigh PSA? Biopsy time. Sorry, no we donít offer the new one, just the old school one.Ē

    Is this a legit concern? Did most of you have to dig, research and work your insurance company to find a good one? I feel like this is a critical first step. Get stuck with an old school one right from the start and youíre just put on the prostate conveyer belt.

  4. #4
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Welcome to the forum, maz,

    I agree with Southsider that you may not have PC at all. Only a biopsy can tell for sure.

    Yes, it is true that around 28% of biopsies can miss tumors. The trick is to seek a highly/well experienced uro so you can take advantage of his/her experience.

    My first thought is that your woes are probably related to your enlarged prostate. Mine had gone up to about 100 gm/cc and I had the frequent urination problems to match.

    When I eventually was diagnosed with a non-life threatening form of PC -- Gleason 3+3=6 -- it was almost a blessing because I had surgery to remove the prostate. This cured the cancer and also cured my urination problems. Now I can go hour after hour without having to go -- and emulating a firehose when I do have to go.

    Hopefully you do not have PC. But a similar case to mine could actually improve your quality of life by letting you snub your nose at the bathroom.

    In any case, if you know people in their 40s & older, consider asking if they have a urologist and start taking down names. This will be a great start to finding a good one to help you.

    Please let us know as things go along,
    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.

  5. #5
    Newbie New User
    Join Date
    Mar 2019
    Iím in Arizona, so I donít know yet if we have state of the art anything here. But yes Iím going to start asking around for Uro referrals. I wonít bide my time but I donít feel particularly rushed either.

    If I may ask a sensitive question... some of you seem to have gotten care from some very prestigious centers. How does that happen? Iím not saying that because I think Iíll need it (who knows), but Iím just curious. Do some of you travel to these places for the best treatment? I canít imagine itís all insurance covered either. But Iíve seen some very impressive treatment stories here. And Iím happy to see so many great successes!

    Here I am posting about one bad PSA test, nothing more. Itís not lost on me that you all have been through soooo soooo much more. You all are soldiers. Mad respect. And much appreciation for the replies for my minor concern.

  6. #6
    There are several blood tests that can be used after a suspicious PSA to help determine if a biopsy is likely to find anything significant. These tests are 4K Score, Prostate Health Index (PHI), and SelectMDX. There may be others, as this is a fast-growing area of product development.

    My advice is to try one or more of these tests to get more accurate data about the need for a biopsy.
    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.

  7. #7
    Welcome Emaz! In order of immediate priority:

    - Calm down. You can NOT assume that you are harboring PCa. You likely are not!

    - It is time to see a good URO MD. Chronic prostatitis and an enlarged prostate should be handled by a URO MD. An elevated PSA (5.2) must be investigated and explained. BPH/prostatitis are the usual culprits.

    - In the less than likely event you are diagnosed with PCa, there are excellent treatment center options in AZ. Both Banner and Mayo would be at the top of the list.

    At this point there is no reason to be scared. Simply get to a good URO MD and let them provide sound guidance and advice.

    You are doing a perfect job of asking the right questions and seeking correct answers!

    Stay strong and keep us updated.

    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Referred to URO MD
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = Gleason 7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left Positive Margins + EPEs. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3a pNO pMX pRO / Prostate Size = 32 grams; Tumor = Bilateral; 20% / Perineural invasion: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml
    uPSA remains "stable" at 84 Months Post Op: Mean = 0.021 (20x uPSAs: Range 0.017 - 0.026) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  8. #8
    Senior User
    Join Date
    Jan 2019
    To answer your question on insurance, if you are not Medicare or working / retired from a large govt agency or corporation, your options for in network care are going to be limited. If you are in an HMO plan, all your options will be very limited.

    If I had a G6 cancer, I would have been treated locally.

  9. #9
    Experienced User
    Join Date
    Feb 2019

    I wish you were not here, but welcome aboard. You're in the right place on this forum. As others have said, try to be calm. Its sort of an 'innocent until proven guilty' situation. I know its not easy. I got my first high PSA test just before Christmas. I had a biopsy on the 17th of January.

    In addition to Mayo in AZ, I've heard good things about Dr. Tamburri in Phoenix. I know he does a lot of the assays like 4K. My boss talked to him a few years ago.

    As far as getting into the bigger centers, I just picked up the phone and called MD Anderson. I've heard that if your doctor makes the call they get you in faster. IDK about that, but there might be something to it. Prior to calling them I called my insurance provided to ensure that they were in network. Its a 10 hour drive for me, but I think it is worth it.

    Take care,

    DOB 6/27/69
    12/21/18 1st PSA 25
    1/9/19 PSA 21.7, Free 1.86
    1/17/19 TRUS biopsy:
    PNI+ on left
    MD Anderson review of slides: 12/12 cores positive
    RB 55% 3+4=7
    RM 29% 3+3=6
    RA 12% 3+4=7
    LB 44% 4+3=7
    LM 84% 4+3=7
    LA 100% 3+4=7
    RBL 2% 3+4=7
    RML 24% 3+4=7
    RAL 26% 3+4=7
    LBL 87% 4+3=7
    LML 100% 4+3=7
    LAL 100% 4+3=7
    CT and bone scans negative
    MRI: NVI, SVI, rectum, bladder neck, sphincter, LNs: negative
    EPE negative, however, lesion in left peripheral gland abuts capsule along the left anterior,
    lateral and posterior lateral aspect of the gland.
    4/9/19 Began 6 months Lupron + Zytiga
    PSA 5/7/19 2.3
    PSA 5/24/19 1.3

  10. #10
    Senior User
    Join Date
    Nov 2018
    Emaz I went to the Mayo Clinic Phoenix Arizona. They were in my network. I called and ask for an appointment with Dr. Andrews. Or you can call and ask for an appointment and they will put you with their first available Urologist. Think they are all good.
    DOB 1955
    63 at dx
    3/2018 PSA 4.05 DRE normal refer to URO small town
    10/2018 PSA 6.28 DRE normal
    Bx 11/2018 12 cores 3 positive one 5% left mid two 50% left base
    Gleason 3+4=7 T1c
    Appt Mayo Clinic Phoenix Az 1/4/2019
    Dr. Paul Andrews recommend
    MRI 2/27/2019 Mayo AZ
    RALP 2/28/2019 Mayo AZ Dr. Paul Andrews
    Path: Gleason 3+4=7, Tertiary Gleason Pattern none, Grade Group 2
    Tumor presents moderate to extensive volume mainly on the
    posterior portion of prostate. Largest tumor nodule measures
    8 mm.
    Prostate: 21g 3.5 x 3 x 3 cm
    EPE: Absent
    Bladder Neck Invasion: Absent
    Seminal Vesicle Invasion: Positive (left seminal vesicle)
    Margins: Positive left lateral base and central base margins 2mm focus each
    Lymph Nodes involved: 0
    Lymph Nodes examined: 16
    Nerves spared right side only
    Pathologic Staging (AJCC 8th Edition)
    Primary Tumor pT3b
    Regional lymph nodes: pNO
    Distant Metastasis: Mx
    Continence 99% 9 weeks
    Post Op PSA: 4/17/2019 <.1
    2 Month PSA: <.007


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