Looking for people who had a G6 diagnosis and opted for RARP

Posted by mtcoastie @mtcoastie, 2 days ago

Howdy, I would love to hear from people out there who originally diagnosed with G6 PCa who opted for RARP. Any thoughts? Regrets? Deciding factor and recovery/outcome. This is me, G6, low decipher, low PSA but a significant family Hx. My father died from PCa in his 70’s. I’m currently on AS but not really enjoying the “hurry up and wait” approach. I apologize to everyone who recognizes my handle and story as I am sort of repeating a question I posed several months ago, I just need to hear some supportive stories….

Thank you all!
Pete

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I just want to say that if you stay on AS make sure to have MRI every year and biopsy at least every 1.5 to 2 years.

My husband's AS failed since his urologist was not following that protocol with biopsy frequency ( he had one and than another one 6 years later) so my husband ended having 4+3 with cribriform and IDC according to second biopsy, which was in actuality 4+5 after RARP pathology examination. If we knew what we know now, my husband would have had RARP at 3+3 (after his first biopsy).

May your PC stay 3+3 forever < 3

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14 years ago they stopped doing PSA tests on men because too many men were being treated with a Gleason six.

As a result today, we have a large number of people with advanced prostate cancer.

My father died of prostate cancer. My brother got it at 77 six years after being on active surveillance.

You can get an Episwitch PSE test to see if there is prostate cancer found in your system. In that case, you need a biopsy. The test is 94% accurate. That would be a lot better choice than rushing into surgery.

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Profile picture for jeff Marchi @jeffmarc

14 years ago they stopped doing PSA tests on men because too many men were being treated with a Gleason six.

As a result today, we have a large number of people with advanced prostate cancer.

My father died of prostate cancer. My brother got it at 77 six years after being on active surveillance.

You can get an Episwitch PSE test to see if there is prostate cancer found in your system. In that case, you need a biopsy. The test is 94% accurate. That would be a lot better choice than rushing into surgery.

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@jeffmarc thanks Jeff. My issue which I’ve expressed before is the waiting while being on AS. My urologist is great and will do whatever I want. He is a fan of AS but understands it’s not for everyone. My logic(at least today’s logic) is have surgery while I am young(51), recover and hopefully be cancer free. As opposed to waiting, getting tested every 90 days and wondering if I have worse PCa hidden in my prostate.

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Profile picture for surftohealth88 @surftohealth88

I just want to say that if you stay on AS make sure to have MRI every year and biopsy at least every 1.5 to 2 years.

My husband's AS failed since his urologist was not following that protocol with biopsy frequency ( he had one and than another one 6 years later) so my husband ended having 4+3 with cribriform and IDC according to second biopsy, which was in actuality 4+5 after RARP pathology examination. If we knew what we know now, my husband would have had RARP at 3+3 (after his first biopsy).

May your PC stay 3+3 forever < 3

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@surftohealth88 yup, that’s where my head goes. My urologist is great, PSA every 3 months, MRI and biopsy at 1 year mark. I just don’t think I’m the kind of person who can just wait to see what may happen, let alone wonder if there is worse PCa that is yet to be found. At 51yo I would rather just get on with it. Buuuut, I don’t want to have any regrets if faced with significant side affects

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Profile picture for jeff Marchi @jeffmarc

14 years ago they stopped doing PSA tests on men because too many men were being treated with a Gleason six.

As a result today, we have a large number of people with advanced prostate cancer.

My father died of prostate cancer. My brother got it at 77 six years after being on active surveillance.

You can get an Episwitch PSE test to see if there is prostate cancer found in your system. In that case, you need a biopsy. The test is 94% accurate. That would be a lot better choice than rushing into surgery.

Jump to this post

@jeffmarc

Almost 11 years ago I was diagnosed with prostate cancer after a PSA of 11.3 and a follow-up biopsy. Chose EBRT in late 2015. Today my PSA is 0.09.

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I was either 3+3 or 3+4, depending on which COE pathologist you believed. I also had a family hx of prostate cancer, lost a brother to it. After 4 years of AS, I chose surgery. I had a closed mind to radiation, saw side effects in brother and was not willing to take that chance, but radiation has been great for many. I chose treatment over AS because subsequent MRIs went from nothing to two lesions and because biopsy results went from 3+3 to 3+4 (again, depending on which pathologist was accurate). Focal therapy was not an option for me due to lesions in two regions, but I would have gone with TULSA Pro if it was possible.

For everyone, I would recommend exploring AS, radiation, surgery and focal therapy. You already have a good urologist (I didn't). The surgery itself was a breeze, really no pain, hated the catheter. For me no ED at all from about day one. However, 3 months later I still have some incontinence, hoping it will continue to get better. Jury is still out on if I would have the surgery again, only downside is the incontinence. If it goes away, then absolutely recommend surgery. I wanted to be around as long as possible, side effects or not, and I decided surgery was the best option. Now if incontinence does not go away, maybe I should have chosen proton beam radiation instead, maybe.

My story, hope it helps some.

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Profile picture for mtcoastie @mtcoastie

@jeffmarc thanks Jeff. My issue which I’ve expressed before is the waiting while being on AS. My urologist is great and will do whatever I want. He is a fan of AS but understands it’s not for everyone. My logic(at least today’s logic) is have surgery while I am young(51), recover and hopefully be cancer free. As opposed to waiting, getting tested every 90 days and wondering if I have worse PCa hidden in my prostate.

Jump to this post

@mtcoastie
Because you are young, I would hold off as long as possible for treatment. You are going to lose the ability to have normal sex if you have a prostatectomy. At 51 that is a real social problem. Yes, you can get an implant. If you can’t get an erection after that you may need two or three of them by the time you are too old to do it. Many men get depressed about the situation after surgery.

The surgery may also leave you incontinent. You just don’t know.

If you want surgery, find out if you can get the nerves spared, At least that would give you a chance of a normal erection.

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I am 61 and trying to determine when to treat and how to treat, when the time comes. I have been reading here every day, learning, studying, obtaining as much info as possible and praying.

1. What info can you obtain from MRI? Lesion(s) size(s), Pirads rating(s), extracapsular extension?

2. PSA history and trending

3. How many biopsy cores are 3+3? % of cores 3+3?

4. Decipher score

5. PSMA pet scan info

6. Other?

My personal data is conflicting. Some info indicates pursuing treatment makes sense. Other info indicates AS is appropriate, for now.

I am being proactive to obtain more info.

My Surgeon and Radiation Oncologist think my lesion may have 3+4 or worse cells, even though initial biopsy was 5 cores with 3+3.

We are working on completing another MRI and Biopsy for more information and data points. I would love to stay on AS, but do not want to miss the opportunity to treat at an early-enough stage.

My 1st consultations with two Urologists in 2025, they both indication 3+3 meant AS and see you in 6 months. Radiation Oncologist was more concerned with Pirads5 lesion and possible extracapsular extension.

This led to Decipher testing and PSMA petscan in 2025

Best Wishes

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Profile picture for mtcoastie @mtcoastie

@surftohealth88 yup, that’s where my head goes. My urologist is great, PSA every 3 months, MRI and biopsy at 1 year mark. I just don’t think I’m the kind of person who can just wait to see what may happen, let alone wonder if there is worse PCa that is yet to be found. At 51yo I would rather just get on with it. Buuuut, I don’t want to have any regrets if faced with significant side affects

Jump to this post

@mtcoastie That
BUUUT is critical and should not be taken lightly!
I totally get the anxiety, impatience and the need to ‘get on with it’ but don’t let your emotions rule you.
There is NO being done with this, OK? Many, many men have long term remissions until the day they die and others do not. You are young so please don’t rush the process and shoot your load, as it were, too early in the game. Time IS on your side!
Your Low Decipher is a key biomarker and it’s good right now so enjoy it; it may stay that way forever and you’ll never have to face the miserable SE’s of cancer treatment. Or, it could change to a higher number - which your urologist is watching - and may signal a time to act.
I was diagnosed with glaucoma over 30 yrs ago; my mother had it and lost the vision in one eye…I was hot to do surgery ASAP, but my ophthalmologist laid out a long term plan, explaining the nuts and bolts of the disease in MY particular eyeball pattern (yup, we all have one) and he advised very conservative treatment with eye drops and 6 month monitoring.
He even described his flow chart approach of “if this, we do that” and so on. He said that treating too soon can sometimes be worse because once that option is
Used your choices become less. And if your situation becomes more serious there might not be anything that can be done…
Over 30 years later, and with cataracts forming in both eyes ( and driving me batshit) he still wants me to be tolerant since simple cataract surgery in MY case would be anything but simple or routine…so I adjust yet again.
Be grateful for your situation and don’t rush headlong into decisions that are irreversible….Best,
Phil

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I was just like you except 68. I could not stand the AS for even one week. My father had died from it but was also 87. I convinced my surgeon that I wanted it out that I could not take the mental anguish. I had a friend with PC at the same time and he is still on AS doing fine. My caution is that I am on this site. I have incontinence and ED. 6 years of < .01 PSA. I had nerve sparing surgery. 51 is a pretty young age to have to start this journey. I solved erections with Trimix but its not the same. I can maybe help INC with an AUS but I am sure a lifelong struggle.

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