Selecting Active Survelliance based on GG1 and small GG2 in biopsy?

kj2364: did you have the MRI's and biopsies done at the same facility by the same team of doctors? At a center of excellence?

Based on my research and personal family experiences, active surveillance is a good option for certain age groups and those with other significant health issues. Prostate cancer is normally slow growing and if you have other health issues that will most likely end life, why go through other more invasive treatments. However, if you are relatively healthy and want to live a prostate cancer free life for years to come, I can't imagine choosing active surveillance as a treatment plan. Cancer is ambiguous/tricky and any doctor that says he/she can be 100% confident that prostate cancer will not metastasize outside of prostate is obviously overstating their abilities.

For myself (56, healthy, active, expectation/want of 30+ years of PC free life), I chose a robotic radical prostatectomy at a center of excellence (Mayo-Rochester). Thankfully, excellent surgical experience, no spread outside prostate (as far as we know), and limited long term side effects. Obviously, everyone's experience is unique and there are no guarantees for outcome. A big part of my decision for a RP was the ability to do post operation pathology to get the best understanding of cancer stage and future for myself.

Good luck with your decision.

Jim

I don't understand why an active lifestyle would lead one to recommend against surgery?

My own story: after PSA rise from 4 to 6 in a year i I biopsy, ten samples, two @ Gleason 3+3, one @ 4+3. Having done 35 Ironman + 6 other marathons (8x Hawaii, 3x Boston) in the previous 20 years, surgeons told me in spite of my age 74 I was a good candidate for surgery and good immediate recovery in part *because* of my fitness.

Seven months post surgery, I have been using 0-1 pad daily for the past 4 months, competed in more triathlons (shorter distances), and have continually improving sexual function, now @ 22/25 on the ED scale.

Except for 4 weeks of recovery post surgery and 3 months off the bike, the procedure did not impinge on my athletic activity levels or performance, athletic.

bens1: Thanks for your comments! I'm just one week into being given the news that I have prostate cancer, so please understand the following comments in light of my "cancer revelation".

I'm an engineer who spent a 40+ year career in research and development and now I'm one week into researching a subject that is new to me...but I know how to perform research! So far, it seems to me that there is no "standard of care" PC treatment that provides a "cure" without SIGNIFICANT consequences.

Before my fusion biopsy I had absolutely no symptoms (elevated PSA), now I'm sore from having 21 needles poked into my prostate - my only (new) symptoms! From the research papers, books and sources I have read during this short time, it appears that even the best RP treatment will involve at least a week of catheterization, a minimum of 2-3 months of incontinence - possibly lasting as long as 18 months - and an 6-8% change of permanent incontinence...AND a ~70% chance of ED 2 years after RP! All this makes AS (at my stage, having no symptoms other than a sore prostate due to a biopsy) sounds quite appealing!

I'm exploring radiation treatments, but I having difficulty getting over "the idea of poisoning my way back to health" (as one source put it). In any case, I appreciate your comments and that you are happy with your treatment decision. I'll probably be further down the road of "acceptance" of this diagnosis after I've had more time to absorb its impact and I'm further down the road regarding my own research.

trusam1: Thanks for your encouraging comments! You certainly are in a class of your own regarding your many fitness accomplishments! I wish I had started running earlier in life. I have always been fit and without significant health issues; however, I just started running at age 66 (~18 months ago) and I'm now consistently running 2-3 times a week and participating in the occasional 5K race. The amazing thing is that I could not come close to completing a 5K race 30 years ago and now I do it routinely.

All that said, my positive PC diagnosis was a "shot across the bow", as I'm sure it is for every man who hears those words from their doctor. In any case, I know enough to take my time on making any treatment decision and doing my research so that I am entirely comfortable with whatever course I pursue.

It's good to hear of your quick recovery and ability to get back to your athletic activities. All the best for your future!

I think my situation is close enough. Apologies in advance for the length. I'm 63 y/o, dx in February with a couple of 3+3 and a 3+4 (20% 4). I'm healthy with no other medical problems, and like you had recently begun exercising, losing weight and feel better than I have in many years. The private urologist (who doesn't do RARP) sent me to a urologist in the group who ranked surgery last among the 3 options and radiation and AS as about the same. I thought this was very telling - a surgeon recommending against surgery. [I have a medical background but dont' think that influenced him.] The group's radiation oncologist recommended radiation. The referring urologist ranked surgery first, radiation second, and AS last. I would have probably chosen brachytherapy offered by the RO, except I thought the guy was a jerk and I simply didn't trust him.

Next appt. was with the Multidisciplinary Clinic at a well known Baltimore institution. The RO and urologist both recommended AS with a repeat PSA at six months (was unchanged) and repeat bx at the one year mark, in February 2024. I trusted them and am happy with my decision today. BTW, genetic testing (free for prostate CA patients through the PROMISE study) showed no mutations associated with prostate CA and tumor genomic analysis showed low likelihood of progression within 10 years.

So, to your specific question, the private urologist with ~800 RARPs recommended against surgery for my 3+4 cancer. And the big-name academic urologist who's done a few thousand also recommended against surgery. At least for now.

Lastly, I want to validate your feelings. Initially I was bewildered, but then was angry – not at the cancer so much, but that for intermediate cancers like mine, there was not enough research over a long enough time period to know which is best. And there still isn't. Instead, we have "shared decision making" which means you decide what treatment receive. If you end up with refractory incontinence or ED from surgery or radiation or progression on AS, hey buddy, it was your choice.

I'm not as angry now, though still annoyed with the state of prostate cancer research. The consolation is that for most men, it's a very slow growing cancer. Unless theres's more to your story, you should feel comfortable taking your time, doing more research, getting other opinions, and letting your feelings settle before committing to a treatment path. A sincere good luck to you!

midatlpatch - Absolutely amazing the doctors are pushing for active surveillance at a relatively young healthy age of 63. I agree, prostate cancer is almost always slow growing and you have time to make a decision, but cancer is cancer. If metastasis occurs, PC can only be managed for a lifetime versus potential elimination with other treatment plans. I had two uncles with prostate cancer. Both went with active surveillance. One was 80 and had many other life limiting illnesses and eventually died from something other than PC. The other (65) had his prostate cancer metastasize to his bones and died from PC.

So glad you are doing the research and best of luck making your final decision.

Jim

I am on AS for now 3+3 in less then 5% of one core the sample was to small to get a genetic test my K score said a 9% chance of aggressive cancer what bugs me is I can not get 2 doctors to agree my urologist said operate the radiologist said radiation or I could watch it I went to a oncologist he wanted to put me on casodex I went to Mayo they said it was so small I should just watch it and get mri/PSA once a year it would be a lot easier for me if I had 2 doctors in agreement on a treatment plan

I’m an active runner and outdoors person. I’m running in the Boston Marathon next April. I’m 75 and placed 1st in a half marathon three weeks ago. Glad to hear about your running and interest in keeping it up. I had surgery two years ago. My PSA was 4.2. I had 12 biopsies and 6 were 3+4s. Good luck with your decision. In my case, life has returned to normal. Jerry

@rport3, I’m glad that you remain active and follow a healthy diet with active surveillance. I hear you about the “bad news” is that this is not a new lifestyle for you as physical activity and good eating are long engrained habits. While healthy habits reduce the risk of cancer, they don’t guarantee total prevention. I sure wish they did.

Your level of fitness and health will serve you well however should you need treatment in the future. Did you learn anything new with your second opinion?