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Thread: New member, new worries.

  1. #21
    Newbie New User
    Join Date
    Mar 2019
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    9
    Quote Originally Posted by Busby View Post
    While you are waiting, go to youtube and watch some videos from the Prostate Cancer Research Institute with these titles:

    Prostate Cancer 101: So Your PSA Is High, What Now?

    All About Imaging

    I didn't know if it was OK to post links so I didn't. The titles should get you there.
    I couldn’t find the second one but the first was enormously helpful, thank you so much. I’m trying to find a balance between taking appropriate action and not freaking out. That video really helped.

  2. #22
    Welcome Emaz. Reading your posts, I honestly think you are working against your own best interests. You are clearly concerned about new and long-standing prostate issues as shown by your initiative in joining and posting to the Forum. Yet you worry about what a uro might advise you and seem to see value in procrastinating. May I suggest a different outlook?

    Having a good, experienced uro means that he or she will tell you, based on a history, physical, and any tests ordered, which of your fears are unfounded and what needs to be investigated further. Today medicine proceeds by joint decision making. Your doc will have to convince you why a biopsy is or isn't advisable. Perhaps you can get relief from long-standing urinary symptoms. When you have signs and symptoms but no specialist, the branching tree of What If's is so dense and daunting that anyone's head can spin. Once in the hands of a good uro, that picture will change as you take one step at a time.

    Once you have your appointment set up, you'll feel relief and I think you will realize you have less, not more, to worry about.

    Djin
    Last edited by DjinTonic; 03-21-2019 at 01:30 AM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. biopsies, PCA3 -
    2013 TURP (90→30 g) then PSA 2x/yr, DRE yearly
    6-06-17 DRE: nodule R, 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 LVI SVI LN(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; Pomi-T (2/day)
    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

  3. #23
    Newbie New User
    Join Date
    Mar 2019
    Posts
    9
    I’m afraid of a biopsy, I think for good reason. It seems to me that recent imaging advances are a better idea but that route still seems to be uncommon.

    So I think for me it all comes down to finding the right Uro. Not an easy task when I factor in location, insurance, cost etc. But I am starting on that.

    And isn’t a second PSA test a reasonable thing to expect? With free PSA? I have very little data right now. I’m trying to find balance and appropriate steps rather than panic and just picking any old Uro. There have been so many advancements, why not try to get the benefit of them?

  4. #24
    I don't think it's quite a Holy Grail quest for the one right(eous) uro. Ask your friends, family in your area, and doc, go online and check the credentials of uro's in your area. I don't see a need to travel a great distance. Transperineal biopsies appear to have a near zero infection rate (although I can tell you I had no complications from the 9 standard TRUS biopsies I had over the years). An MRI is fine if your insurer will cover it before you have had a negative biopsy---but most won't. And if an MRI identifies a likely lesion(s), a biopsy is always the next step.

    A relatively small percentage of men who do have prostate cancer have a serious, high-risk variety like I did. But anyone who does would want to know early on, and if they don't, they deserve the peace of mind that comes with knowing that, too.

    I also think your uro new uro will be best situated to decide which PSA and other tests are best for your particular case.
    Last edited by DjinTonic; 03-21-2019 at 02:39 AM.

  5. #25
    Top User
    Join Date
    Aug 2016
    Posts
    1,346
    All there is are reasons to be afraid. Fear is a mental condition created and held in place by reasoning. If you want to stop yourself, be afraid. If you want to help yourself set the fear aside and the thinking that is the source of it.

    I can conjure many reasons not to do what's best for myself. Humans are masters at rationalization. It is arguably our greatest weakness.

    Glad you found us. Nobody has to go through this alone with run away fearful thoughts. You may consider therapy to help as you navigate your thoughts.

    All that aside, let us know when you have an appointment with a urologist. A biopsy is your new next best friend, if you need one. A biopsy that is. We're your new next best friends now along with your new urologist.

    I had a biopsy. Saved me from the worse this disease has to offer. Now I'm just waiting to see what else it wants to throw at me.

    You're not alone. It just feels that way sometimes. Set a time limit for being afraid of a biopsy. I suggest no more than a day because it really is a waste of time. It changes nothing and nothing changes until you give it up.
    Last edited by Another; 03-21-2019 at 08:45 PM.

  6. #26
    Quote Originally Posted by Emaz View Post
    I’m afraid of a biopsy, I think for good reason. It seems to me that recent imaging advances are a better idea but that route still seems to be uncommon.

    So I think for me it all comes down to finding the right Uro. Not an easy task when I factor in location, insurance, cost etc. But I am starting on that.

    And isn’t a second PSA test a reasonable thing to expect? With free PSA? I have very little data right now. I’m trying to find balance and appropriate steps rather than panic and just picking any old Uro. There have been so many advancements, why not try to get the benefit of them?
    What you said is almost an exact quote of several postings I made here in May, June, July 2018! I can easily identify and understand your stress and the urgent need to take action - make decisions.

    BUT - you need to take to heart the fact that you are starting down a winding road with lot's of intersections, blind corners, and dead ends.

    NOTHING happens quickly or even with any sense of urgency that you, the not-so-patient patient can appreciate. As others have mentioned, the decision tree is dense and the only thing to do is look to the NEXT decision, learn everything you can about that decision, gather what information you need, and then WAIT for the decision. You and your doctor(s) will jointly process each bit of information obtained and then decide what next needs to be done.

    I to obsessed over local doc, private practice, university or research practice while trying to find the correct starting point. I soon learned that, INITIALLY, I only needed a competent and experienced urologist to begin the assessment process. He eventually told me he was the team captain and I was the team owner. I set the general strategy and he would make sure the correct players were on the field at the point in time they needed to be. Your first guy is not necessarily the one to cure you, they are just the one to make sure you and the special doc make contact at the appropriate time.

    Read a lot, ask a lot of questions, and try to take this thing ONE step at a time without anticipating things that you cannot know or even understand.

    It took me a couple months and several stern scoldings on this wonderful support site to get to the point I am recommending.

    PATIENCE!
    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
    Top User garyi's Avatar
    Join Date
    Apr 2017
    Posts
    1,107
    Quote Originally Posted by DjinTonic View Post
    I don't think it's quite a Holy Grail quest for the one right(eous) uro.
    Thanks, DT....I just spit up my coffee, laughing so hard.

    "Humans are masters at rationalization. It is arguably our greatest weakness". Exactly! Along with illogical worry and fear.

    Emaz...I suggest you reassess some of your very strong opinions regarding PCa treatment, especially given your admitted lack of experience or knowledge on the subject. Good luck getting to some good decisions!
    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
    pT2c pNO pMn/a Grade 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor remains in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19
    We'll see....what is not known dwarfs what is thought to be fact

  8. #28
    Senior User
    Join Date
    Feb 2017
    Posts
    130
    Reading these posts took me back a couple of years. I think to one degree or other almost everyone realizes, “this is a situation outside my control, and if I don’t take charge and get a perfect score on how I handle it my life is over.”

    What I’ve learned in this very unwanted journey is that I am in a PROCESS. Not an event or a series of events. The tree and the branches of the tree are a good analog.

    I, too, tried to gobble this up in one gulp.

    The process helped me slow down.

    At each stage I had more info. That info took me to the next stage for decision and best treatment.

    Read Dr. Pat Walsh’s book “Surviving Prostate Cancer” (4th Ed.). He reinforces substantially the PROCESS of understanding and then treating PCa. Most of all, (at least for me) his book gave me reassurance that only very rarely, is Pca an emergency.

    Finally, you have been in conversation with exceptionally smart (and caring) guys who understand almost exactly how you feel. What you see and take in are experiences from each of us. And you will not go through this alone. Everyone who cares about you will be part of your success in killing off or controlling this nasty disease.

    Oh, and if you want to feel just a bit better, click on either “Pancreatic or “Brain” cancer. We Prostate guys have it easy compared with those folks.

 

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