Any regrets?

I respect everyone's decision. In the end, it's up to each of us to live with our choice. I'm still a newbie that joined this great group of guys, after surgery. After seeing my post op. results, and my progress after 13 days, I know I made the right decision.
I've been spending a lot of time on this forum. Mostly to further my understanding about this awful disease but also to read about everyone's journey and the pathways taken along the way.
I'm VERY curious to know if anyone has regrets about their final decision. Surgery or whatever! ......It seems to me that most posts advising against rushing (maybe the wrong word), into surgery are coming from guys that opted (so far), to do a number of other things OTHER than surgery and not many posts from us that chose surgery, advising differently. For the benefit of other newbies trying to decide and for lack of another way to put it.....Does anyone regret their final decision and hind site always being 20-20, what could they have done differently to have had a better outcome?

This topic has come up before. Actually, we have discussed it as recently as last December:

www.healingwell.com/community/default.aspx?f=35&m=2934734&p=2

and more so in other threads in the past.

We can discuss this again of course, but might be useful to review these previous discussions.

Searching "regret" (without quotes) in Search box above can locate some other relevant threads.

Lotsa,

No regrets here, too late anyway. I wanted the chance for a cure, and robotic removal was the way to go. I did extensive research, and have been prepared for over a decade. My father is an 18 year survivor, seeds and radiation. His middle brother, my Uncle Johnny is a survivor, but my youngest Uncle, Richie, died from our affliction. He was misdiagnosed, received terrible guidance from the VA, and by the time he had some great medical care, it was too late. Three tours in Viet Nam, with extensive agent orange exposure and alcoholism didn't help any either. My Surgeon in Syracuse, Crouse Memorial came with a stellar biography, and close to 2000 procedures under his belt. My Wife and I loved him, and provided us an alternative to Strong Medical in Rochester, with another great Surgeon, that was an extra hour away. I was more worried about my (2) Chow Chows, they are my Beloved Kids! Carmelita was furious with me for that! Additionally, I've three very close friends that had the da vinci procedure over the last 5 years, one of which with my Surgeon in August. So, in short, NO REGRETS!

Great news on your progress! Congrats! I leak like a facet all the time. More when standing, I'll attribute that to gravity. Sitting and laying down, less, but still going on. The difference, my bladder is able to fill in the latter two positions, I get the urge to urinate, and am able to tightly hold the urine in and get to the toilet. I still squirt while getting up, but I know this is progress, and will not allow myself to sink into depression again. You know what, I've stopped counting pads. If I'm wet, and want a dry pad, I've paid for them and deserve the change, to hell with counting how many I use to gauge progress! Thanks to this great forum and the wonderful insight and experiences I've received from all my new Brothers, I know I will beat all of this inconvenience!

I believe what John_T said 100%. Very few men here will cop to regrets. And, at the same time, I also believe the exact opposite.

We have exactly as many men here with regrets as we have men who had disappointing results from their treatments. Take me, for example: Currently I am incontinent, impotent and pharmaceutically castrated. Things happened that I regret. To some extent I was responsible for them and I regret my actions to that extent. But to a much larger extent my results were bad luck -- things beyond my control -- and I regret those elements too, but not in the sense you were asking about.

I think one of the things that makes this topic difficult on this forum is that we too often lose track of that element of luck in out outcomes and, without bearing it in mind, asking a man if he has regrets is an invitation to a sort of Stalinist self-criticism of a rather painful sort. And, not only is it painful, it is pointless, and useless and wrong. Members who had favorable outcomes from their treatment, no matter how well researched or sensibly chosen, should remember that those good outcomes were not guaranteed going in and they were lucky, at least in part. And members who had unfortunate outcomes from their treatment and are plagued with endless second-guessing themselves should also remember that to a large extent they had bad luck and not beat themselves up about it.

I actually had a PSA test yesterday, and will go over the results with my RO on Thursday.  I'm still pretty early in my journey as I had SBRT in September.  One month out, my PSA had been cut in half so now we'll see where we are 5 months out. 

At this point I have no regrets.  I have had no side effects and the SBRT procedures seem like a distant memory at this point.  I got some great advice from a number of doctors and some great guys on this site.  Time will tell if I continue on my trip to my nadir, but I have been very pleased this early into the trip.  No leaking, full sexual function, and I feel good.

Mike

I selected surgery even though I was DXed with Gleason 8. No regrets.

I only regret that I have but one prostate to give for my country.

that's a "no"

I think these responses will be very beneficial for other newbies. Great info. Thanks. Good luck to all.

GOP. do you mind sharing your age and initial numbers?

I chose IMRT and HT...unfortunately neither worked and I became Hormone refractory in 18 months....but I still believe at my stage that was the best decision and would do it the same way again if I had to.

Thanks for all the responses. Overall, it seems everyone is pleased. What I was hoping for was responses from anyone that could provide help to others regarding choices that were made that turned out wrong. Waiting too long for surgery. Choosing surgery and regreting it. Choosing brachytherapy or any other treatment and having regrets...etc.... I know this might be a topic guys don't want to open up for discussion but I think this info. would be very helpful for others just starting this journey. Thanks, in advance, to those who respond.

My only regret was not understanding that finasteride caused my PSA to be cut in half which caused me to wait a couple years too long for a bx. And I regret putting too much trust in my GP to tell me when a bx was indicated. Beyond that I have no regrets. Tomorrow is a BIG day for me!
Bob
________________________________________________________________
DOB January 1944
1981: prostatitis
2000-2013 BPH treated with finasteride & tamsulosin; low T treated with androgel
PSA History:
Pre 2009 0.4-.6
11/2011 2.2
8/2012 2.7
2/2103 5.5
4/2013 6.1
5/2013 6.6
11/1 2013 0.1

6/2013 Bx:PCa Gleason 4+4=8 (Bostwick), 4+5= 9(Johns Hopkins), 2/6 cores, 10%, 40%, DRE neg. (Stage PT1c)
7/2013 bone scan and pelvic MRI negative
9/7/13 open RRP, Johns Hopkins, Ted Schaeffer MD PhD.
9/9/13 Pathology: 33G, both nerves spared, SVI, EPE and 4mm pos. margin at base (Gl7), Stage PT3bN0M0)
9/20/13 Foley and staples removed
Continence: one pad per day for 13 weeks, now none. ED pre and post op.
Watchful waiting until next PSA Jan 30, 2014

I agree with John that we are all prone to ego-protective attitudes. We all tend to give salience to opinions and information that conform with our decisions, and discount those that do not (cognitive dissonance). I also think golfnooch raises some excellent points - I'm appalled that surgeons don't disclose statistics on failure rates, ED, incontinence, penile shrinkage, climacturia, stress incontinence, etc. Neither do I let ROs off the hook, or oncologists who offer hormone therapy. A lot of regret has to do with unreasonable expectations. I agree with him too that counseling ought to be part of the what's offered to the patient.

A European study found that 19% of men suffer decision regret after surgery. An Australian study found that 4% expressed treatment decision regret after external beam radiation therapy, but it was higher, 8.4%, for those who had hormone therapy with their RT, but only .5% among those who did not have hormone therapy.

Among men on ADT for metastatic disease, 23% expressed decision regret; higher for surgical castration than for chemical castration.

I haven't seen any stats on decision regret for AS, BT or SBRT.

We keep having this question. Perhaps it changes with time for some, or perhaps some had choices.

Mine was very aggressive, but I investigated all the possibilities, going as far on opinions as my insurance would cover. I had no excess financial resources, and no home to mortgage (as the HIFU clinic suggested I should do).

I was turned down for consideration by MD Anderson and Loma Linda for Proton.
I was refused consideration of proton by the insurance company as it was considered by them to be experimental.
I was turned down by the premier seed centers at the time as too advanced. (Really wanted to consider seeds, as I was an early investor in the technology when they were borrowing money to rent a lab. Lost everything I made on them in the crash, along with all the rest.)
I was told that because of previous surgeries I could, but should not consider RT by one premier center, and was told at others that I had very low % chances of cure.

In the end I could choose surgery, and get at least a good idea of what was there (with curative intent), do RT knowing the multiple ROs did not give much positive feedback, or just go on HT at 57.

All things considered, surgery was my realistic choice. No regret on what I decided. It was based on what I could do.

My real regret was that my insurance up to that time did not cover or promote wellness visits, and I never had any inkling to get a PSA test. Who knows if mine started at 40, 50, 55?
Doesn't matter now.