I’m 52 and was diagnosed with Gleason 9 (4+5) in May 2022. Otherwise I’m in great health.
This started at the end of 2021 with a bout of prostatitis (unfortunately, common for me since college). After 6 weeks of antibiotics and anti-inflammatoires, PSA was still elevated at 19 then 20 on recheck. I was pushing for a prostate MRI in January but new urologist said “it’s likely due to chronic prostatitis, let’s wait and recheck the PSA and If it’s still high, then I’ll order the MRI”. So, we wait and it goes to 28 before he orders MRI.
MRI showed a large PIRAD 5 lesion with extension outside the prostate, right seminal vesicle involvement and pelvic lymph node involvement.
Biopsy came back with 12/12 cores positive with Gleason 4+5=9.
CT scan all clear except for lymph node involvement. Bone scan showed area of concern on right hip. PSMA PET scan confirmed bone scan finding of small metastasis as well as lymph node spread (including one near left collarbone).
Currently on Lupron with Abiraterone/Prednisone. Evaluating radiation options soon as well as getting a second opinion from a different organization. (Extremely disappointed with the group that did my initial diagnosis but I’m stuck with them for insurance reasons.)
Keeping up on my normal exercise routine and also increasing my walking.
Getting over the shock and absorbing lots of information Very fortunate to have awesome family and friends to help me.
Made several friends in the Reddit PC group and some suggested I check out this site as well.
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AlvinSD
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In many ways I was in exactly the same situation when I was diagnosed 15 years ago. Luckily for you, treatment options are much better today. With a PSMA PET scan showing the cancer, you could benefit from using PSMA Lutetium 177 treatment. It’s a systemtic radiation therapy that will find your lesions by itself and treat them effectively. It’s also great in combination with Zytiga!In our Danish group for young PCa patients we have met several men that initially were ignored by their GP. This is a very real factor behind a delayed diagnosis for many men. A PSA of 20 is way above what can safely be ignored. You should not let the clinic off the hook at that point.
That is a very long story. The major things are listed here:2007 Diagnosed, PSA 17-20, radical surgery, Gleason 9, Casodex
2008 surgical castration
2011 PET FABC scan - RapidArc 78Gy to a lymph node
2014 Zytiga. RapidArc to another lymph node
2017 PET PSMA and first two PSMA-Lutetium 177 treatments
2018-2020 PSMA Lutetium cycles
2021 Triton3 study with PARP-inhibitor - no effect
2021 PSMA Lutetium - last of 11 cycles
2021 Docetaxel 10 cycles
2022 Cabazitaxel - currently at cycles 3
PSA is now hovering around 4-5, no symptoms from the disease, no pains.
I live in Denmark and some of the treatment has been provided by the national health services, the rest I have accessed at various commercial clinics in Europe.
Hi Alvin. I was diagnosed January 2018 with a Gleason 9. My PSA never went above a 2.2. At diagnosis I had extra-prostatic extension into the left vesicle. Later C-Choline scans at Mayo Clinic showed bone metastasis in my left anterior pubic ramus.
Being in good general health when diagnosed at 52, my wife and I assembled a team of doctors with the thought of aggressively treating this very aggressive disease. I had a radical robotic prostatectomy six weeks after diagnosis, followed by a six month course of Lupron and then 38 courses of radiation.
After those three courses of treatment the scans showed the bone mets. Then had three separate courses of proton radiation, two cryosurgeries, and another 12 months of Lupron along with Erleada. I’ve had no evidence of disease for the last 12 months.
There’s two things I hope you take from my reply (this is my first time ever posting to this site): 1. I would suggest you take control of your own health care as best you can. Don’t take no for an answer when a doc tells you to “wait and see” or refuses a scan for insurance purposes. This is a serious disease and should be treated such. 2. Don’t wait. I’m convinced if I had waited even another couple of months my situation would have been significantly worse.
Good luck to you! I hope you can have the same result as I in the future.
The target area was originally an 8cm lesion in my left anterior pubic ramus. Since it recurred again a combination of proton radiation, cryosurgery and ADT were used in treatment until my last few NED scans. The upside was obviously the negative scans. The downside was it weakened my pelvis until I fractured it.
Hey Alvin welcome to the group. Thank you for sharing your story. Lots of information in here to absorb. I am 50 years old diagnosed at 45 so I feel your pain. Stay positive, get the best team of doctors you can afford around you and do want you have to do to keep this beast from spreading out of control.
Sounds like the Lupron and abi pred should be a good start. If the PSMA pet scan clearly shows where the lesions are talk to a radiation oncologist about targeting them.
Thanks. Since my original post, I sought second opinions because of little confidence in the Urologists I was first dealing with (very, very bad experience with delays in diagnosis and how the doctors and whole department “managed” me…basically just another prostate with cancer…factory medicine).
I have a great Medical Oncologist and Radiation Oncologist. Finished 6 rounds of Docetaxel at the end of October, continuing Eligard every three months and (in July) changed from Zytiga to Darolutamide. My last PSA was 0.3 and I start radiation next week.
I feel great except for the side effects associated with the Eligard/ADT.
You seem to be in much better hands now, getting more intensive treatment to optimise your chances of a good result. Very positive news. I think that for most of us who are handed this diagnosis at a young age, we need to move from the urologists to the oncologists to get proper treatment. In general, urologists don't want to rock the boat,. whereas oncologists know that urgent action i necessary.
I’m doing really well. I’m still on ADT and darolutamide but my PSA has been undetectable since finishing radiation end of 1/23. I’m praying the meds keep working.
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