Living with Prostate Cancer: Meet others & introduce yourself
Welcome to the Prostate Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet others living with prostate cancer or caring for someone with prostate cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.
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Let's start with introductions. When were you diagnosed with prostate cancer? What treatments did you have? Tips to share?
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
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Here are my PSA results.
2016 Nov 22 1.6
2017 Oct 26 1.7
2024 Jan 30 4.08
2024 Aug 14 4.03
2025 Jun 25 5.7
My primary physician suggested I get an MRI. I had the MRI without and with contrast which showed a suspicious area.
Biopsy was just done on Dec 1, 2025, and I got the results on Dec 3 via my patient portal. Several cores have group 2 with Gleason score of 3+4=7. My urologist/oncologist is to call me tomorrow to discuss my results. I have done a LOT of research and am overwhelmed with all the information.
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2 ReactionsWhat you want to ask is what percentage of the cores with 3+4 had tumors and what percentage were a four. If only five or 10% is a four, then you actually could go on active surveillance. If it’s a high percentage of four, then you probably want to do treatment.
You should ask for a decipher score. That will tell you what the chance of reoccurrence is. If it’s very low, then again, you could consider going on active surveillance.
Your PSA is a little elevated, but it is not huge. Did the MRI show that you had a large prostate? That can affect your PSA And make it higher without their actually being aggressive cancer.
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2 Reactions@tmclain
Hello,
I saw this post from July 2019, how are things going now December 2025 ?
Thanks
Still cancer free.
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3 ReactionsHello new to posting I am interested to know if anyone else has had this combination of prostate and seminal vessicle cancer as of September this year tests showing no progression or advancement fingers crossed and praying August 2, 2024 radical prostatectomy and pelvic lymphadenectomy, for poorly differentiated carcinoma, predominantly involving the right seminal vesicle and focal infiltration of the prostate. A single right pelvic LN positive for metastasis. All of the 8 left pelvic nodes were negative
. Prostate, radical prostatectomy: PAX8-positive
adenocarcinoma, forming a 5.5 cm mass that predominantly
involves the right seminal vesicle with focal infiltration
into the prostate and left seminal vesicle.
Radiation Therapy Treatment Details (10/21/2024 - 11/22/2024)
Sites: Prostate bed, Pelvic lymph node
Technique: IMRT
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1 Reaction@ros0142
Your situation is not unusual. You’ve been in this forum for a long time. You should be aware that other people have come up with similar issues to what you are describing.
You don’t mention whether you are on ADT or an ARPI. Those can keep your cancer undetectable for years. They don’t actually kill it. They just suppress it and prevent it from growing..
You had radiation a year ago and you’ve been undetectable since, That usually means it’s a time to try stopping the drugs and see if your PSA rises. Have any of your doctors talked about doing that?
If you’ve managed to stay undetectable without any drugs, then that would be great.
In your case, a decipher test could tell you what your chance of reoccurrence is.
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4 Reactions@jeffmarc
Jeff, no ADTRARPI medicine taken and it was undetectable September 3. Yeah I’ve been part of the group for a while but have not been active. I have not had a decipher test PSA was .01 and CT pet scan did not show anything so I’m feeling good but still apprehensive as I’m sure many do. I’m sure I’m not the only one but I’m just wondering if there are many other people that have that with side effects and if anybody has had reoccurrence, thank you for the info I appreciate it I will be back in February third for next scan so I will be asking questions as to chance of reoccurrence fingers crossed and saying prayers for everyone here thanks, Jon
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1 Reaction@ros0142
If you haven’t been on the drugs, and you were undetectable for a year it’s a real good sign.
A percentage of people have some side effects after the prostatectomy and radiation. My main side effect has been incontinence starting about five years after the radiation and it’s gotten worse every year. The fact that you didn’t really have much in the way of side effects at the time is really good. Yes, some things can creep in, but you’re not having an issue so things could continue smoothly, They sure have for me other than that incontinence issue and it’s been 12 years since I had IMRT radiation, like you had.
Wish you the best on your next set of tests in February. Keep the faith.
Diagnosed with prostate cancer, took multiple samples mostly 5-5, risk factor was 100%. They are giving me ADT (Orgovyx, Abiraterone and Prednisone), and after 3 1/2 months of ADT, radiation for 8 weeks. They are talking another year of ADT but I’m not handling ADT well and I only want to agree to 1 year of ADT as most of the info I’ve seen is that they are generally moving away from extreme long term periods of ADT. I think a lot of my problems with ADT is they never gave any counciling on the real side effects and the counciling they gave was deceptive, they talked about hot flashes, weakness, feeling tired, some loss of libido etc (which I got but were at most only annoying) but then I got blind sided by, no you lose all libido most likely forever, your genitals will shrink to a third of their original size and that will be forever too and you will lose muscle mass so quickly that your blood will have so much debris that it may destroy your kidneys trying to filter it out! Not sure if what they are doing is the right path, the only thing I know for sure is I’m to get off ADT as fast as possible!
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3 Reactions@kharlan oh, also by the time I was diagnosed the cancer had metastasized to my lymph nodes.