Recently diagnosed -- Would surely appreciate any comments/perspectives

Hope4, I have been in an Active Surveillance program for eight years.

As far as the mental stress of knowing that you have cancer in your body is concerned, just spend some time reading the posts on various prostate cancer forums. You will read of so many men bemoaning the awful side effects of their treatments, that you will treasure every single day that you can safely avoid treatment.

Tim G said...
What I'd suggest before deciding on any option other than Active Surveillance, is to research the sexual side effects of treatment (you can find lots of information at this forum), then weigh the consequences of non-treatment (AS) vs. treatment and decide which one is the best choice--emotionally and physically--for you.

My own anecdotal evidence (one guy's experience) is that if AS had been a good option when I had a prostatectomy as it is today, I would have chosen it for my own low-risk G6. Once you've had treatment, you can't, like a vasectomy, undo it. And my opinion is that MDs offering treatment advice understate sexual side effects.

Welcome to the forum and best to you on your decision.

I agree with Tim's sentiments about MD's (surgeons) understating the sexual side effects. They're surgeons, that's what they do.... operate. Mine used those exact words. You may choose surgery, and thats ok. I did, but mine was further along than yours. Surgery gets it out. For some, that is a huge deal. You're also 52, not 72. That plays into it too, sexually speaking. You really do have the benefit of time. Use it wisely to explore all your options. Best of luck, and hang with us.

I just recently met with both a surgeon and a radiation oncologist at Sloan Kettering in NYC to gather information and perspective. Both took a lot of time explaining the details, but what was surprising was both preceded their discussions of their respective expertise with a strong recommendation for an active surveillance program given my Gleason scores. The surgeon thought that considering surgery at this point might be like "swatting flies with a sledgehammer." The radiation oncologist stated that if I decided I preferred radiation at this point my best options considering all factors would be LDR brachytherapy first (because of the known long-term SEs) or SBRT second (because of the rate at which its success is trending).

After discussions with the wife, I'm leaning on giving AS at Sloan Kettering a try and then using that time to visit other specialists, interact with the knowledgeable folks here, and keep filling the notebook with info and knowledge. In addition, I'm going to really fine tune my diet -- I've been a pescetarian for about 10 years but there's still a lot of processed food that I can eliminate.

My slides are currently out for a second opinion at Johns Hopkins, so after I receive those results, it might change my direction.

@toyoung -- thank you for your clarification and your insight on the AS program at Sloan Kettering.

And, again, thanks to everyone for the feedback and contributions to this thread. I hope to contribute more to other threads as I gain knowledge and experience on this journey.

Sorry to again read of your penile issues, MK1965.

On the flip side for other readers, five weeks after surgery I haven't lost any size, am having morning erections and stirring down there at other times, am 98% dry, and I'm 71. Luck, a great surgeon thousands of kegals and no ED issues before surgery. 5mg of Cialis a day can't hurt, either.

Hope:...you won't be sorry for MSK and AS. You have a fine plan and an excellent outlook. Good luck.

PS: The VED was news to me, and looks interesting: https://www.youtube.com/watch?v=CJ1wxnskxko

Well, the pathology report from Johns Hopkins/Epstein was finally completed, and it basically mirrors what was in the MSKCC report: 2 cores with G6(3+3). The MSKCC report was more specific with "1%" and "3%" respectively while the Hopkins report just stated "less than 5%" for both.

With this second opinion, I'm even more confident then to give active surveillance a try. My mind has had a tendency to run wild lately with all of those "what about this?!" and "what about that?!" situations, but I've been trying to practice some "mindfulness" instead trying to map out every scenario for the next 10 years... The wife keeps saying to dial it back and keep the focus on the next six months.

Glad things are settling for you! I agree with garyi above...I think you'll do well.

<<<"So, did you gain more knowledge or panic after reading message boards today?">>>

I did a great deal of reading, reviewing of major hospital websites and talking to Uro's and RO's before deciding on my treatment. Even after that I switched doctors and hospitals, after even more research and talking to prior patients.

Only after all that did I start reading several Forums. Most helpful and informative when balanced with personal research.

As for today, I'm staying away from TV panic, as I await Irma. My first post surgery blood draw was scheduled for Monday. That ain't gonna happen.

H4H-

If your wife is supportive of AS, that's a big plus for you. I talk to so many men who get pressure from spouses, co-workers and friends to get immediate treatment. They all mean well, but they really don't understand that prostate cancer is different. Over time that negative social pressure adds up and erodes confidence. Who wants to constantly have to defend one's decision? I think live PC support groups, if you can find one nearby, are a godsend. You will get support for your decision from guys who do understand (at least most of them will).