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.

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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What 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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Profile picture for tmclain @tmclain

I was diagnosed in May, 2007 and had a radical prostatectomy. I was very fortunate in that the cancer had not spread and I have been cancer free since July, 2007.

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@tmclain
Hello,

I saw this post from July 2019, how are things going now December 2025 ?
Thanks

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Hello 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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Profile picture for ros0142 @ros0142

Hello 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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@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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Profile picture for jeff Marchi @jeffmarc

@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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@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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Profile picture for ros0142 @ros0142

@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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@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.

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Hello Collen. My name is Brad. I am 65 years old and was diagnosed with stage 1 prostate cancer in August of 2025. The doctors initially wanted to do active surveillance. However, I have a family history and due to my brothers more aggressive cancer, I decided to have a decipher score done on my biopsy. It came back moderate to high risk of it turning more aggressive in the future. I had laparoscopic robotic surgery on November 11th of this year. It was successful but difficult due to my anatomy and being 70 pounds overweight my surgeon said. He did not recommend any more pelvic surgeries unless I lost considerable weight. I am 7 weeks post-op and still dealing with post-operative pain which has prevented me from going back to work. I have minimal pelvic discomfort but more pain by the three ports on the right side of my abdomen. I cannot sleep on my side without pain and am sleeping in a recliner. I cannot bend over to pick something off the floor. The ports on the left are not tender but the three on the right are. They are the larger incisions. I am still functionally not to where I need to be pain wise. The pain level is between 1 and 5 depending on my activity. I am going to schedule an appointment with my surgeon by the end of the week if I am not better. Has anyone experienced similar symptoms after 7 or 8 weeks post op. Wondering if it could be a hernia or adhesions. Look forward to your response.

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