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With the benefit of hindsight would you have chosen a different remedial option

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Posted 12/14/2013 5:14 AM (GMT 0)
I have read a few posts and some of you have had horrendous post op outcomes. Some had been on catheters for months, others had to have radioactive treatment after the op, others were left incontinent for almost a year or more, and others are still battling ED.

My intent is not for you to lament your decision nor to feel that you have made the wrong decision, but rather with the knowledge you have now about the disease would you have acted differently?
Posted 12/14/2013 5:57 AM (GMT 0)
No.

My decisions were based on what were considered to be facts at the time. The way some things turned out negative for me, could not have been foreseen regardless.

We can research, double-check, investigate, study, etc, then make our choice(s), but we can never control all the factors in our outcomes.

David
Posted 12/14/2013 6:02 AM (GMT 0)
and some have been in the "zero club" for so long that they question whether they were "overtreated".

I think my doctor either saved my life or bought me a bunch more time. no regrets.

ed
Posted 12/14/2013 11:27 AM (GMT 0)
I made my decision five years ago. Back then there were not a lot of guys doing AS; therefore, although I discussed it with my urologist, I did not give it much consideration. Based on what I know now I might have considered trying AS ..... no, I probably wouldn't ..... I really wanted the cancer out of me. No regrets.
Posted 12/14/2013 11:53 AM (GMT 0)
I don't think my husband would have made a different treatment decision. He didn't visit a radiologist prior to surgery. The biopsy changed his Gleason 7 score from a 3+4 to a 4+3.
Mid-way through SRT, just over a year out from surgery, and with his radiologist indicating had he first had radiation treatment, there would have been a high possibility there'd he would have been cured, it makes you second guess the choices. Who's to say. Fingers are crossed that the SRT knocks out this cancer!
Posted 12/14/2013 1:01 PM (GMT 0)
Hindsight is a beautiful thing, but when the dx comes,every choice is a crap shoot. If I could have seen a film of my side effects "back to the future", I want to say I would have done AS, but who can really know. Regards Inkhorn
Posted 12/14/2013 1:16 PM (GMT 0)
Sometimes the treatment choice is made for us, due to circumstances.

As in my case. I had had a TURP operation (transurethral resection of prostate) a few months before the prostate cancer diagnosis, because of the need to correct a severe case of BPH that had been causing me pretty serious urinary difficulties.

So when I got the PCa diagnosis a few months later, the first thing my uro said to me was that surgery as my treatment option would now be rather problematic because I had had the earlier TURP.

He then also added that because of the BPH my prostate had already enlarged so much that brachytherapy was no longer an option for me.

Also, AS was out because I was told that my numbers had gone beyond the point where that would have been a realistic option.

That meant that being treated with radiation was the major treatment option that was left, and, it could be said with some truth, that radiation became my mode of treatment "by default," since it was what was left, and that was what I got.

However, as my signature numbers below indicate, it seems to have been a successful treatment so far, so certainly no regrets there.

Perhaps it could be argued that I was "lucky" in the sense that I never had to agonize over a treatment decision for myself since that decision was essentially made for me by my circumstances.

I don't know how common my situation is, but it can happen, as my experience shows.
Posted 12/14/2013 2:08 PM (GMT 0)
I wouldn't change a thing.  And please remember that those of us who post here on HealingWell are not necessarily representative.  I suspect that the tens of thousands of guys who are successfully treated generally don't post on sites like this. 

I continue to visit HealingWell partly because I think it's important for men coming to terms with a prostate cancer diagnosis to see that good outcomes DO happen, most of the time.  The weeks following diagnosis were a dark time in my life, and I wish I had found this site earlier than I did.  The other reason I hang around is because I've developed a real interest in the struggles of some members and a genuine feeling of friendship toward so many.  I've only actually met a couple of guys who post here, but what a great group we have.  I enjoy feeling part of this really interesting group of men whose lives have been affected by our disease.

Posted 12/14/2013 2:29 PM (GMT 0)
Nope. Very happy I decided on brachytherapy as my primary treatment.
Posted 12/14/2013 3:05 PM (GMT 0)
Remedy? As in Cure?

I think I knew even before surgery when scans were clear, and all my doctors were trying to tell me that they thought the cancer was contained in the prostate, that I did not have a curable type of PC.

Even so I followed my doctors with surgery and radiation in "their" hope for a cure. Wouldn't have changed that. Just doing radiation would not have given me the information I got after surgery. Information that just confirmed what I always felt and knew. But it was information about the enemy which prompted me to always be on the offensive battling back.

The only thing I would have done differently would be to have Dr. Myers on my team of doctors earlier on. He completely changes how I feel about this disease.
Posted 12/14/2013 3:05 PM (GMT 0)
great response, Clocknut.

Nothing has changed for me besides dry orgasms. Can't regret a thing because fortunately everything went perfectly.
Posted 12/14/2013 3:17 PM (GMT 0)
All things considered, I would still go with the RP. My pathology (Gleason 3+4 with some outside the prostate wall) reinforces that decision. I just had a 18-month post-op PSA of "undetectable" so that is good.
My one regret is not demanding more ED treatment and therapy right out of surgery. I think like many guys here I did not realize how devastating ED has been (and still is for me).
Posted 12/14/2013 3:43 PM (GMT 0)
I am just a tad over the 1 month mark post op and even with all the issues I have had, am still having or will have in the future, I have no regrets with my choice. I made the best decision based on the information I had on hand at the time. sure we all can second guess ourselves al day but all that will do is cause further problems.

We must just keep moving forward and take one day at a time and be glad that we are where we are, the alternative is much worse.

Like others have said I wish I would have found this site when I was first diagnosed. it is great to know that there are so many others here who are in the same type of situation as yourself. I guess there is strength in numbers. Still wish that none of us would have ever meet under these circumstances, but it is what it is and we will get through this, as hard as it is. Thanks for everyone for the support. All the best.
Posted 12/14/2013 3:47 PM (GMT 0)
I am still leaking some 16 months later but I would not change a thing. My goal was to get the cancer out of my body and so far it is. The other side effects were expected and are a reality that I have to deal with.

Most men become continent quickly, I got the short straw along with others like me. But many more men are still fighting their battle with PCa.
My day may come anytime but for this moment in time I am undetectable and do not second guess my choice in treatment or surgeon.

Bill from Florida cool
Posted 12/14/2013 3:51 PM (GMT 0)
No regrets here. So far I have the trifecta and feel great! If I could ever get over my PSA anxiety, my life would be perfect.

Tom
Posted 12/14/2013 4:49 PM (GMT 0)
Surgery certainly turned out to be more difficult and had worse ED side-effects than I expected, although so many posters here have had great surgeries with quick recovery and few SE problems. In general, I would say the two things newbies should be diligent about are looking into are the skill of the surgeon and the possibility of brachytherapy instead of surgery. I was too easily satisfied, I think, with my surgeon's "hundreds" of surgeries under his belt, and I never did investigate his success rates with recurrence and side effects. And I never was made aware of what an attractive alternative to surgery brachytherapy seems to be in all respects. I did have a consult with a brachy specialist (by mistake, actually) and he said my prostate was too big for brachy, but if I'd known more about it at the time, I'd have pushed back on that and would have looked into doing whatever I could to see if I couldn't become eligible for brachy somehow.
Posted 12/14/2013 4:53 PM (GMT 0)
Treatment? Perfectly happy so far with what I had done. Given all the data we had available, this was the right choice for me. Time will tell how successful it all has been; the initial diagnosis is still worrisome for a durable remission but it is possible. Not going to sweat that unless something goes south. Right now, I have no side effects from 79.2 Gy of radiation, and just the expected side effects of HT which are pretty tolerable. With an undetectable PSA, and still glowing from the GFMPH Cruise, I'm in a really good place right now!

I do wish I had better, earlier screening and detection. A nice clean surgical option would have been great. Being diagnosed with high volume G9 5+4 and cT3 was rather a shock. It left me with limited treatment options. I regret not having annual PSA checks between age 52 and 54, since that might have caught it developing by the PSA trend. Even at age 55, it was 4.1 so barely of concern.
Posted 12/14/2013 4:55 PM (GMT 0)
I believe there was another similar, recent thread to this one. My answer there, and again here, to the question at hand is an absolute, unequivocal NO - I wouldn't change a thing. I researched the living stew out of this beast and the treatment options - that I would have to say bordered on an addiction. Like everyone else I wanted the cancer cured - but I've got to be completely honest here and say that QOL issues ran a really, REALLY close 2nd. So then thus far I'm blessed with my results including no SE's whatsoever.

I'd also like to simply add "What Clocknut said", completely!
Posted 12/14/2013 7:15 PM (GMT 0)
My regret is never hearing the words from my doctor "watchful waiting." To this day I am not sure if the surgery was necessary. It was either radiation or surgery as a choice. The biopsy result was a slow growing type cancer. I'll never know if the decision was the right one.
Posted 12/14/2013 8:31 PM (GMT 0)
With my pathology, the question was not of waiting, but of either surgery, radiation, or both. For me, despite problems with the surgery (bladder neck contracture, stitch abscess and recovery of function), and needing salvage radiation 3 years later, I have no regrets. Bad pathology requires much action, and I chose when and where I got things done. Could I have waited longer for SRT, as my psa was 0.08? Sure, but I saw which direction it was heading, so I went ahead with it. As F8 said, my doctors either saved me or bought me more years. My biggest regret? Not learning how to control the anxiety waiting for the results of my blood draw every six months. That doesn't seem to get better.
Posted 12/14/2013 10:03 PM (GMT 0)
Nearly two years out and I still feel that my choice was correct.

I do get second thoughts from time to time but with each passing PSA test, I get more confident in my path.

I'd be more confident if my hemorrhoids weren't so bad today and I didn't need to get a tooth pulled this week.

Andrew
Posted 12/14/2013 10:50 PM (GMT 0)
Absolutely NOT! Given my psychological make-up, ego, and age I made the only decision that I could have made after doing my research--IMRT by IGRT followed by lupron with casodex thrown in before and after. My tale is long but to simplify it at my initial consult all I recall is that surgery was recommended (for 5 minutes) and that my nerves would be removed as would a wider section which would probably leave me incontinent for life..the other option I was given was "hormones" which would last me a few years. When I asked about "radiation" I was informed that "we don't do that here, that's it's done in Milwaukee"..
I knew that I was at the wrong place so did my research at my HMO's physicians library, selected an RO who was recommended by an attendant and his views coincided with mine so we "got her done". Quite frankly, in Feb it will be 3 years and I am amazed at my success so far but extremely thankful...Godspeed all my Bros!
Bill idea
Posted 12/15/2013 1:04 AM (GMT 0)
At ten months out, I have no regrets about choosing robotic surgery.  If there is one thing I could change, it would be having the surgery sooner...to catch the cancer earlier.
Posted 12/15/2013 1:13 AM (GMT 0)
Win, lose or draw, when I made up my mind to have RALP and chose who I wanted to do it, I knew that no matter what, I had made the right choice for me and I would NEVER second guess myself.
It is what it is!
Posted 12/15/2013 4:31 AM (GMT 0)
No regrets as to choice of treatment.

I talked to specialists in every available type of treatment all over the US, and chose from the few that were willing to treat as advanced a case as I had.

Then the post op path proved that the real situation was so much worse than what we thought.

Are things good now? No. Would they have been any better with any other choice? Not that I can see. Would I still be alive to be having this conversation? Based on the stats & experts, No.

Am I happy that I have PCa to talk about? No.
Is it "remediated"? No. Not in the sense that I use the term in business. I am not, and likely will not ever be "cured".
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