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

Posted by mtcoastie @mtcoastie, 6 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

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@mtcoastie
from my personal experience:
G6 from biopsy sounds less intimidating compared to higher numbers but the G6 grading was done based on very small samples and is not a guranteed number. I was told mine was a G6 based on biopsy and was highly recommended to stay on AS. But I decided to go with RARP. The final pathology came back as 3+4 ( 6-10% of pattern 4) and on post op visit my surgeon said that I made the right call! I had an experienced genito urinary oncology surgeon from Vanderbilt. I have complete control of bladder from the time catheter was removed; except once every two or three months when I feel tired and try to stretch my upper body I get a drop escape from my body. I don't have ED problems. It's been a little over a year and I feel peace that I got it out. The two main factors, i considered was AS doesn't show the real picture and I didn't want to risk my life based on guess work and if left untreated or unremoved it is going to keep growing and get worse. I was 57 when i was diagnosed and had surgery just before i turned 58.
I wish you all the best.

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Profile picture for mtcoastie @mtcoastie

@ucfron thank you for your response. Ummm, RARP for G6 I guess could be considered extreme? I was told that due to my age that as far as treatment goes it was the best option. If I went the radiation route I stand a good chance of having secondary cancer later in life. Conversely my age also gives me the best odds of recovering from potential side effects. As far as statistics are concerned people with 20-30% of RARP patients have worse cancer that wasn’t detected. That’s what I don’t like, so yes, the sample taken are G6 but that may not be the full picture. Is there a procedure(s) that you think I should ask about? I would rather not roll the dice of ED, but also want to get busy living and put this behind me.

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@mtcoastie All you statements are true regarding your age and recovery, but G6 is the lowest possible grade anyone would consider being cancer and some consider it pre-cancer to be watched. It may never develop any further in your lifetime. There are lots of other treatments available at your stage, but again it’s up to you and several other factors like number of cores, percent of cores, location of tumor, confirmation it’s localized, etc. My tumor 3+4=7 (1 core out of 13, 70% of the core was abnormal cell growth, less then 10% was 4) was on the front half interior to the prostate in the transitional zone. I also had a Prostox test of my biopsy slides that said I would not be a good candidate for high dose radiation, so I opted for Hemi Gland Tulsa Pro at Mayo in Jacksonville. Very few centers do this procedure and it just started to be covered by insurance in June if 24. They essentially ablated the entire front half of my prostate so I still have half of a prostate. The back side is where all the important stuff is like semen and nerve bundles. My initial PSA pre-surgery was 4.5 and cancer was confirmed with a PRAIDS 5 MRI and biopsy, and PSMA PET confirmed it was confined. Anyways at my 3 mos test yesterday at Mayo my PSA was 0.51, so much lower then the Dr expected. I’ll keep having PSA blood test every 3 mos since I still have half a prostate, but all looks good so far. I was able to have sex 3 weeks after the precedure and no issues with ED. I’ve also had no urinary issues at all. As a matter of fact I urinate much stronger and better since the procedure because my tumor was restricting urine glow in my ureathra. I am very happy I chose Tulsa Pro which has a cure rate of about 85-90%, and less then 1% quality of life impacts. It also does not limit any salvage treatments in the future. You need to choose what’s right for you, but with G6 you have time. Get a 2nd, 3rd, 4th etc opinion and visit cancer center if excellences in your area. I spoke to 9 Drs in 9 mos at Advent Health, Moffit cancer center and Mayo. Get all the tests you can including a decifer, prostox, and Artera AI before making a decision. Don’t get pushed by one surgen to immediately have surgery that you may regret the affects of the rest of your life. You have time, use it .

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I will agree with several others that mention Active Surveillance. I was diagnosed 15 years ago with G7 and just in the last year was treated. So had 15 years of good bodily function. During that 15 years, the med research exploded with many new treatment options. What will happen in the next 15 years? “It’s cancer, so get it out” has needlessly damaged a lot of men.

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There are two groups with low grade PCa. Those that want it dealt with, THIS WEEK. And those that are okay to push it off.

Both can be correct.

I went 8 years with my G-6 and the Pirads starting going up a few years ago. Finally did biopsy and will start ADT this week. I am totally happy with the delay, but I understand some can not deal with the "wait".

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Profile picture for eddy1954 @eddy1954

There are two groups with low grade PCa. Those that want it dealt with, THIS WEEK. And those that are okay to push it off.

Both can be correct.

I went 8 years with my G-6 and the Pirads starting going up a few years ago. Finally did biopsy and will start ADT this week. I am totally happy with the delay, but I understand some can not deal with the "wait".

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@eddy1954
50% of people that are on active surveillance need treatment within 10 years.

My brother was on it for six years before he needed treatment.

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Best decision I ever made to have RP back in 2013 because I am here today and presently cancer free. Since that date I have not had to worry about whether I did the right thing or not; or live in fear at the time if I didn’t have the surgery of what was to come. At 49 yo, I was diagnosed G6 PCa in Feb-2013 through a biopsy. PSA was not high. My local doc was proposing AS, in spite of family history. I had been having biopsies every year since 2006 after my younger brother was diagnosed with aggressive metastatic (stage 4) PCa at 41. He was given 9 months, no options for treatments. In between, father diagnosed with PCa at 70 and underwent radiation. In 2013 brother was still alive, through the extraordinary efforts of Mayo and their great Urology team. I immediately was at Mayo in less than a month, full gauntlet of tests, confirmation of the diagnosis, and scheduled RP for APR-2013. Surgery went well. Brother died months later. I am only here today because of him making me get tested and making the decision to have surgery. Still have some sexual dysfunction, but I can live with that because I am able to live. Remember, every situation is different. I made the right decision for me based on my set of facts. You need to make the right decision for you and be comfortable with that.

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Profile picture for nd1063 @nd1063

Best decision I ever made to have RP back in 2013 because I am here today and presently cancer free. Since that date I have not had to worry about whether I did the right thing or not; or live in fear at the time if I didn’t have the surgery of what was to come. At 49 yo, I was diagnosed G6 PCa in Feb-2013 through a biopsy. PSA was not high. My local doc was proposing AS, in spite of family history. I had been having biopsies every year since 2006 after my younger brother was diagnosed with aggressive metastatic (stage 4) PCa at 41. He was given 9 months, no options for treatments. In between, father diagnosed with PCa at 70 and underwent radiation. In 2013 brother was still alive, through the extraordinary efforts of Mayo and their great Urology team. I immediately was at Mayo in less than a month, full gauntlet of tests, confirmation of the diagnosis, and scheduled RP for APR-2013. Surgery went well. Brother died months later. I am only here today because of him making me get tested and making the decision to have surgery. Still have some sexual dysfunction, but I can live with that because I am able to live. Remember, every situation is different. I made the right decision for me based on my set of facts. You need to make the right decision for you and be comfortable with that.

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@nd1063
Have you had hereditary, genetic testing? Your brother, and you, getting it so young when your father got it so much older could mean you have a genetic problem.

My father died from it at 88. I have the genetic problem of BRCA2 and got it at 62, My brother got it at 77 because he doesn’t have a genetic problem.

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