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Newly Diagnosed and Confused

I’ve always had PSA/DRE with my primary doc and urologists, since 2013:
12/2013 2.74
02/2014 2.45
08/2014 1.86
12/2015 3.35
01/2016 2.2 Free .48 % Free 21.8
09/2016 1.97
08/2017 2.48
08/2018 2.69
08/2019 2.98
06/2020 3.10
08/2021 4.47
…primary/urologist always said it was appropriate for my age, no one had suggested an MRI or biopsy until 2021. I’ve also had right side abdominal pains since 2015, tested with CT scans but never anything identified.

This year I switched primary care doctors and at my annual physical my PSA jumped to 4.4 from 3.1 last year, primary said under 5 is OK for a 72 year old, but if I wanted see the urologist. I did the urologist said we’ll retest, if over 4.0 get a biopsy. Retest in Oct was 4.1, I said how about an MRI first. MRI in Dec read as showing a PI-RADS 4 tumor.

We were leaving for the winter in AZ so I said I’ll get a urologist in AZ and go from there. Hooked up with Mayo Clinic, they reread the MRI upped it to a RADS 5 with capsular penetration to the neurovascular bundle. Also, they told me this was the good news:

Seminal vesicles invasion: Absent
Other organ invasion: Absent
LYMPH NODES: Negative for suspicious lymph node(s).
BONES: Negative for suspicious bone lesion(s).

Got the biopsy 2/18, 22 samples, 15 with Gleason 4+3=7 prostatic adenocarcinoma Grade Group 3 of 5, perineural invasion present, cribriform malignant glands are present, a finding associated with more aggressive behavior. Urologist here said we need to wait 6-8 weeks before taking any actions to let the prostate heal after the biopsy.

Mayo has set up a appointment for a bone scan, see radiologist/oncology and then present me my options. I’m leaning toward surgery if it’s an option for me, rank it out and then cleanup with radiation and hormone therapy….we will see what options they give me.

At this point I’m overwhelmed, not sleeping much, and the PC is always on my mind. Blaming myself a lot, should I have been more forceful in requesting additional tests earlier on, how did I miss this? What are my best choices going forward?

I’m probably providing way too much information but my head is spinning and the unknowns of my future are always on my mind.
Any insights or suggestions for mentally calming myself down would be appreciated.

  1. …forgot to mention, I just turned a young 73 in February.

    1. Hi . Your concerns are certainly understandable. It is never easy to hear you have cancer and the diagnosis, plus all of the information to digest, can be overwhelming. It certainly looks like you have been consistent in monitoring your prostate. Your numbers came back down in 2016 and had a steady rise, but not a large jump until recently and you have been doing what you needed since. You were under a doctors care the entire time - there is no reason to beat yourself up now. The good news is that you have a Gleason 7, which is relatively slow growing. This gives you more time and options. It sounds like your medical team is being aggressive and doing the necessary steps/tests to make sure of what you are dealing with. Given what I said about time and options, the one thing that jumps out to me is to make sure to ask the doctors for the full array of options, so you can look for the best to match up with your particular case, what you want, and your overall health. Know that it is natural for doctors to have a bias towards their specialty - surgeons look to that, radiologist look towards that. It is important to ask each why they recommend a given treatment for you and ask why not other options. Treatments have come a long way, such as Cyberknife and proton therapy for radiation and robotic assisted surgery. This article from our editorial team gives an overview of treatments, with links to more specifics: https://prostatecancer.net/treatment. Know that there are plenty of guys here who have been where you are and this community is here for you. Please feel free to keep us posted on how you are doing. Best, Richard (ProstateCancer.net Team)

      1. I am newly diagnosed(52yrs old) as well 2020 PSA 2.5 2021 3.2 and now as of July 5.4. 14 cores taken in my biopsy of which 4 found cancer 3 3+4=7 and one 3+3=6. PIRAD 4. My biological father had prostate cancer in his late 50s. Unfortunately I did not know he was my biological father until I was 47. Not sure if that would have made a difference because my PSA didn’t pass the threshold until this year for further investigation ie MRI and biopsy. He was one of the first to receive proton therapy at Loma Linda University in it’s infant stages of developing the technology. He is now 89yrs old. I too like you have had upper right side pain for at least 12 years now comes and goes ultra sounds and CT scans have shown nothing on the liver although I was told I had NAFLD. I have some renal cysts but my mom has polycystic kidney disease she’s 82. I have both friends and and family who are surgical physicians and one is a Urologist at Kaiser in Southern California..My consultation with the Urologist says he has concerns mores with the MRI than the Gleason scores because one of the cores tumors is bulging. He did not state it had broken through the encapsulation but has sent the biopsy for further genetic testing. He is wondering if that is a more aggressive cancer.Man I’m young and although it’s never convenient to receive this new no matter the age most of my professional medical friends are urging me towards surgery because of my age and reoccurrence. Definitely wish you the best as we journey through this challenge. Could you provide any more insight.

      2. Hi . Sorry to hear about your diagnosis. First, I want to clarify that I was responding to bogie1949's diagnosis story and do not have prostate cancer myself (although I have a couple of relatives who had it). Second, I'm guessing that the urologist is leaning towards the surgery partially because salvage radiation for a recurrence is easier than salvage surgery after radiation, although the latter is not as difficult as it used to be. One option you could ask about for checking if there may be more significant cancer than was found in the biopsy is urinary biomarker testing, some of which can predict the grade of cancer. Your doctor should be able to provide additional information. Wishing you the best and please feel free to keep us posted on how things are going. Richard (ProstateCancer.net Team)

    2. Thanks Richard.
      The reference link really does a good job explaining my treatment options going forward. Hopefully my choices will be on target and results good!


      1. Your situation sounds very similar to my husband's. His first biopsy was misread as a Gleason 6 and thought to be only necessary for surveillance. Two and a half years later he went to a different urologist. They had their pathology team take another look at the first biopsy, only to find it should have been a Gleason 9.
        Second biopsy, new MRI and PSMA/scan confirmed their findings.
        Decipher rGenomeesult was 0.90: High-risk.
        We were totally freaked out and unsure of what to do next. But, now that we have visited with the Urology/Oncologist and the Radiology/Oncologist and learned everything we could from Dr. Google we now have a plan we feel confident with our plan.
        What is nice is these two Docs work as part of our team and concur with our decision for my husband, to begin with, androgen suppression therapy, receive 25 treatments of External radiation to prostate, seminal vesicles, and pelvic nodes, then follow with brachytherapy boost.
        He first thought surgery was his choice but once he learned he would still need radiation after surgery he decided to skip the surgery and go straight to Radiation. He begins his radiation next week. Things are much calmer now that we have answers.
        I hope you find peace with whatever decision you make for your treatment. Best of luck to you. I will be following you as you progress with your journey. I believe you are in good hands with Mayo Clinic

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