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

I was diagnosed 2 years ago with Gleason 3/4 (5%), T2, Second opinion by a different hospital downgraded to 3/3 (T1). Active Surveillance (AS) was not a great option due my "MRI invisible" lesion that would mean frequent biopsies to supplement MRI data and I had hematospermia (blood in semen) as well along with family history of cancer. (The blood thing is a great motivator for treatment). Pathology after "nerve sparing" surgery was upgraded to T2 Gleason 3/4 (30%). No incontinence, but ED is still there at 17 months.

I would recommend going slow on your treatment decision. I recently attended the Moores Cancer center PC Summit. They gave a very good presentation on AS that shows no increase in mortality or negative outcome by choosing AS and then later choosing a definitive treatment. The one caveat to this statement is that you must stick to your AS protocols with routine PSA monitoring, MRIs, and biopsies.

Best of luck moving forward!

@tuckerp yup, this is the hardest part of PCa. I want the cancer out and gone but there is a potential cost. I have spoken to a couple of people around my age who had surgery and both made full recoveries. They both had that attitude of “it’s cancer, get it out”. One was actually told that by his urologist. One thing I go back to is, is how is the stress of AS effecting me? Probably not good. But would this stress be replaced with the stress of potential side affects?

With a family history of PCa, have you had a genetic (germline) test to see if you inherited and gene mutations related to prostate cancer?
You might not have inherited any and therefore have less reason to worry about family history.

I had a similar score at 57 and decided to have the surgery a few months later after my 58th birthday. Both my father and Grandfather had PC. It killed my grandfather and gave my father a hard time until stroke got him at 73. AS was talked about, but after reading as much as I could about long-range outcomes, I decided to go ahead. I was younger, so recovery outcomes looked better. Also, I was younger which meant the cancer had more time to turn ugly. Those were driving factors. I also never wanted to have another one of those biopsies! In all, it was, for me, not about getting it handled right away; it was weighing the variables with a diagnosis that allowed for options. I did well with the surgery. I had complete control of my bladder from the point they pulled the catheter. I did not, however, get any training on penile recovery. I now think that is as important as choosing a good surgeon. I did get sorta-kinda erections, but nothing great. However, I did continue to experience really nice orgasms. I just started, 7 years later, trimix. It has been pretty spectacular, but I think if I had a recovery plan 7 years ago that included a pump and some daily Cialis, I might not have need for the trimix. No regrets, though. It just made sense to me.

4 Year ago, at age 55, I was diagnosed with prostate cancer - Gleason 7 (4+3). However, before I had my biopsy, I did a significant amount of research and evaluated my life going forward. Based on this research and my person life goals (prostate cancer free for 30+ years to spend more time with family/friends, pathology to physically evaluate margins), I decided that a radical prostatectomy was the only viable option for me. There are many other viable treatment options for men that have different life goals, but for me, I wanted the option that provided me with the most confidence to have a prostate cancer free life moving forward. I was not significantly concerned with some of the potential side effects, such as impotence and incontinence. Continence was a high want but impotence was a much lower want. To ensure I had the best possible surgery, I did the up front research to find the best center of excellence for prostate cancer, and then researched the surgeons at that center of excellence to find the best one - I chose Mayo-Rochester and Dr. Igor Frank. Mayo-Rochester is an amazing place and Dr. Igor Frank was a phenomenal surgeon. I also did all the pre and post therapy. In the end, I had absolutely zero negative side effects from the radical prostatectomy. Amazingly, even the small scars have almost disappeared. I realize negative side effects can occur, so you must go into surgery with the right mind set and accept the outcomes. For me, I did everything possible to help make the outcome a positive one. I think the most important items were picking a center of excellence (& best doctor at that center of excellence) and doing the required physical therapy post surgery.

Good luck and I pray all goes well for you!

Jim

I was barely a Gleason 3+4=7. I only had 6-10% of category "4" cells. So, I was definitely a "7", but still barely so. I opted for the Radical Prostatectomy (RP) and was glad that I did because I had a lot of unexpected additional pathology that the 12-core biopsy never revealed. The post-surgical consequences of the RP are several, but knowing now that I could have gotten much worse, must quicker, and died doing Active Surveillance, I am glad that I took my urologist's advice. My pathology is such that I have a 25-50% chance of my pT3b cancer returning
within" five years even without the prostate, seminal vesicles, and vas deferens...it just seems to come back, especially when, like in my case, there were surgical margins, meaning my urologist left cancerous tissue inside of me..."he did get it all." Good luck to you...I highly recommend the RP.

@beachflyer thank you for your story and experience. I have watched and read a lot about AS that concurs with what you stated. I believe the science and data of AS I’m just not sure it is for me, or better yet it doesn’t agree with my mental wiring. I’m giving it time and will be coming up on a year of AS this summer. Not to get to personal and answer if you want to but in terms of ED are you experiencing no movement or you just need help via meds?

Hello Mtcoastie

Nothing too personal on this forum for me to answer. Night errections went away after survey which is common if not normal post RALP and then as the damaged nerves regenerate night erections will hopefully come back. Most surgeons recommend 5mg/day of
Cialis to improve blood flow.
In my situation, night erections started within a couple weeks of surgery, but they were soft. I tried using PD5s up to 100 mg
of Viagara and the erection was insufficient for intercourse. Tied BiMix, worked poorly, Tried Trimix, erection better, but insufficient for intercourse. So to answer your question, I was using all the magic chemicals to no avail.

Sorry, I don’t mean to sound bad but isn’t a RARP extreme for G6? How many cores and percentages did your biopsy show? There are so many good treatments that can stop the cancer that have a much less affect on
Your quality of life ie Urinary and ED. Chances of having these issues after a RARP are 40-60 % you will. That’s much higher then this G6 becoming serious. It’s your choice but a G6 result, depending on your biopsy results, is not enough to take such a drastic treatment option. Good luck in what ever decision you make.

@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.