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.

Follow the group. Browse the topics or start a new one.

Let’s start with introductions. When were you diagnosed with prostate cancer? What treatments did you have? Tips to share?

Hi. This is my first visit. I was diagnosed in 2001. Had prostatectomy. Two years later radiation. Twelve years later the PSA started rising quickly so I went on Lupron, which kept the PSA down until my last check 6 months ago. Yes, I’ve had many side effects but managed to avoid weight gain and muscle loss. PSA is now 0.6. I’ve had no scans lately. I’m trying to get one of the new PSMA PET scans, but my onco may put me on secondary ADT before then. Any thoughts out there?

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@colleenyoung

Hi @buckeye54, welcome and glad to meet you. Come on over and let me introduce you to a few of the members like @jevan (fellow newbie) @poodledoc @kujhawk1978 @sanway and @ken82 to name a few.

What treatment options have been suggested for you Buckeye?

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Thank you Colleen. I am meeting with my Urologist who did the biopsy in 1 week to go over the results and I'm sure he will discuss options with me. I will be sure to get back on the forum with the results of that visit.

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Diagnosed with cancer last November been on active surveillance since.

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@tropfdoug

Diagnosed with cancer last November been on active surveillance since.

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I was diagnosed this past June. Had an MRI in August and found another spot. Active surveillance was recommended for me as well.

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Hello Everyone! I was diagnosed in May 2021 and have had radical prostatectomy with lymph node sampling. When diagnosed, my gleasons were 6's and 7 in 8 out of 12 sections mostly on the right side, so they decided to take the right side pelvic lymph node for study as well.
I'm only about a week post op but decided to seek out a group, some of whom must have been through this experience to learn from and possibly share my experience should anyone be close to getting this procedure. Still waiting on labs…..

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Hi ! I had my radiation for low prostate cancer ,urologist says it just activated.after 6 months i started rectal bleeding waited for around 3 months if it goes away as just side effect , saw a urologist in around april had a kidney stone laser in Early May but rectal bleeding still on , Gastro enterologist precribed an enema which i had completed in a week with 3 more weeks to go . Was the rectal bleeding associated with the radiation after 6 months where i had then a low platelet and low bp 0 psa or just proctitis by itself …i had colonoscopy in July and polyps had been taken out with biopsy ok .im 74

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Hello, I was dx with Pc on 10/20 with Gleason 6 after Turp surg., 3+3 and on AS. Then had new psa in Jan/2021 with 2.8 and a MRI that found no cancer! Uro. did biopsy anyway and found 1 in 14 cores positive Gleason 7, 4+3.Had 39 treatments RT and currently on final 2 mo. of 6 mo Lupron. So far so good, have some minor hot flashes and fatigue along with NO libido & ED. Hopefully after Lupron finally exits my system the side effects will go away although at 72yrs I'm afraid they won't.

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Your side effects should go away. I'm 76 and had 18 months of Lupron with Proton Beam radiation and the side effects are almost all gone. They say the period you've been on Lupron is how long it takes for the side effects to go away. 72 is not that old. You've got a lot of life to live enjoy it.

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I'm 74 years old, and had a prostatectomy combined with the removal of a large diverticula over 4 years ago. I also had green light laser surgery around 10 years ago. I have experienced some incontinence prior to these procedures, and still do. Due to a recent back surgery, and heart failure I refuse to have any more invasive bladder related surgeries. I manage by wearing diapers. I'm wondering if anyone else operates as I do? Is this the wrong approach?

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@ch665296f

I'm 74 years old, and had a prostatectomy combined with the removal of a large diverticula over 4 years ago. I also had green light laser surgery around 10 years ago. I have experienced some incontinence prior to these procedures, and still do. Due to a recent back surgery, and heart failure I refuse to have any more invasive bladder related surgeries. I manage by wearing diapers. I'm wondering if anyone else operates as I do? Is this the wrong approach?

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Best wishes. I had a prostatectomy and radiation about 20 years ago. Incontinence has been with me since. A few years back my urologist implanted an artificial urinary sphincter which helped my urinary incontinence a lot. I just wear pads for the occasional accident. I’m not bothered by fecal incontinence. The surgery was in and out. Not too bad. A few weeks later I was good to go. Pun intended. Good luck.

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@waynen

Some people on this thread have asked questions about biopsys. This recent study might help in looking at the traditional 12 sample transrectal biopsy done by many urologists and the mMRI Targeted biopsys. It's clear from the research that, if you can get it, the mMRI is a better choice.

The authors of this multicenter, randomized, noninferiority trial compared magnetic resonance imaging (MRI)–targeted biopsy with the standard systematic 12-core transrectal ultrasonography (TRUS) biopsy procedure in men with clinical suspicion of prostate cancer. MRI-targeted biopsy in men with a PI-RADS score ≥3 was noninferior to standard TRUS biopsy, with the detection of clinically significant prostate cancer in 35% of patients undergoing MRI-targeted biopsy versus 30% with the TRUS biopsy. In addition, 37% of patients in the MRI-targeted group were able to avoid prostate biopsy due to low PI-RADS score.

These results indicate that MRI-targeted biopsy procedures may allow for fewer prostate biopsy procedures with similar rates of detection in men with clinical suspicion of prostate cancer.
– Emily Miller, MD

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Can you possibly post results of further studies into the pros and cons of each procedure. I am about to have transrectal 18 needle biopsy as the preference of my urologist. This even though I suggested MRI and targeted biopsy if anything suspicious was noted. PSA 8 now. Two years ago had MRI that scored 2 out of the 5 point rating for likelihood of cancer (ignorant of this except 1 is best for no cancer). At that time PSA was 6. Mine has always run high at 5+. Age 74

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Dear Ratchett, here are some references that you might want to check out. The first is more information on the study that I quoted in my post.
https://www.practiceupdate.com/content/systematic-trus-biopsy-vs-mmri-targeted-biopsy-for-biopsy-naive-men-at-risk-for-prostate-cancer/113309/62
https://pubmed.ncbi.nlm.nih.gov/31897680/
https://www.practiceupdate.com/content/eau-2018-mri-of-the-prostate-reveals-more-clinically-significant-cancers-and-reduces-overdiagnosisnbspversus-standard-biopsy/65548/62
This study has some caveats on it's use but it's a little old. https://www.practiceupdate.com/content/comparison-of-mri-guided-prostate-biopsy-and-transrectal-ultrasound-guided-prostate-biopsy/11996/62

Here's a study comparing 2 different types of ultrasounds with TRUS.
https://www.practiceupdate.com/content/aua-2019-novel-high-resolution-ultrasound-better-than-conventional-ultrasound-for-prostate-cancer-detection/83324/62
I hope that helps.

I have a friend who had the MRI targeted biopsy and he said it took longer then the TRUS because they were very careful to get the samples from exactly the right spots. He was diagnosed with a Gleason score of 4+4.

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