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Knowing what you know now would you go RP or BT

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Posted 3/26/2016 11:43 PM (GMT 0)
GOP:

You say REALLY, but I suspect that's generally true, with some exceptions. If I was cured in 2009, I seriously doubt that I would be as involved in HW

Mel
Posted 3/26/2016 11:51 PM (GMT 0)
Or maybe some of us stay around to help others NOT to make the biggest mistake of their lives....that's my take.
Posted 3/27/2016 12:00 AM (GMT 0)
I think there are an equal number from both camps that stick around or leave or never get here or anywhere else where they can help from their peers.

I don't stick around because i'm cured or for the noble cause of helping others. I stick around because i'm scared to leave. I don't believe i'm cured; I think i'm in remission.

but I also believe others can benefit from the experiences of the guys who've been around awhile.

ed
Posted 3/27/2016 12:14 AM (GMT 0)

halbert said...
I'm not sure what the latest stats are, but I seem to recall reading somewhere that surgery is still the dominant treatment for uncomplicated PC, by something like a 2:1 ratio. And yet, in here, whenever this kind of question comes along, the ratio of RT (whether BT or ERT) to surgery patients is flipped substantially towards radiation. I'm not sure it means anything, I'm just pointing out the nature of this forum.

I also note that the 'radiation' guys tend to be much more vehement about the upsides of their choice and more dismissive of the downsides--and extremely willing to point out the downsides of surgery (which they didn't have btw) to any and all newbies. It's been pointed out many times that the people who tend to come and stay in a forum of this nature are those who have had difficult cases and difficult treatments. Those who made it through the 'once and done' treatments don't tend to stay around.

But wouldn't that also apply to the "once and done" RT guys, at least after their treatments were completed? Which might take some weeks depending on type of RT.

I am a surgery guy who regretted it within a few days of having it done, and then even more so once I got the pathology report which gives me a high likelihood of needing RT anyway later on.(though so far, so good). But even though I did not quite realize the full spectrum of possible SEs from surgery, I knew enough to know I did not want it unless there was a chance of knowing I was cured. You know, the old "we got it all". I feel like I was encouraged to consider that a reasonable likelihood. With what I know now, I don't think it was reasonable. The more reasonable likelihood was that they would NOT get it all.

However, if I had not had these cursed SEs(and I am fairly lucky compared to some), I must admit, I would probably be a big fan of surgery.
Posted 3/27/2016 12:27 AM (GMT 0)

compiler said...
I chose surgery after very carefully interviewing assorted practitioners and considering SE, etc.

For me, I had the wanted it out mentality but also the desire to know the exact pathology. I also liked SRT as a fallback option (a few folks take umbrage when I say that, but it is actually a very logical, valid reason). I also had a unique situation going on. I was having severe BPH issues. Flomax had worked great but was getting less effective. A few times, I was VERY close (jacket on) to going to the ER because I could not urinate. That was getting miserable. The surgery relieved that 100%.

Would I make the choice now, knowing what I do. Absolutely, due to the BPH issue. Sans that issue, it would be a much tougher call. I think people softsell the radiation SE. The surgery SE are clear and happen immediately. The radiation SE CAN be miserable, but not for a few years. I recently had a sudden urinary bleed that was very scary. It only happened once and resolved quickly. I suspect I just popped a blood vessel. But it might also be the start of radiation cystitis issues due to my SRT

But, again, if I had the decision to make now, sans BPH, I would be in a quandary!

Mel





Mel

As I have said before, despite my lack of enthusiasm for the surgery choice, there has been one (and only one) blessing relative to RT: BPH symptoms have been zero since the catheter came out. But then so has any form of sexual pleasure, so I don't think that is a trade off I would readily make again.

But considering the levels PSA often drops to with RT, and and considering the large amount of PSA is contributed by an enlarged prostate , then doesn't RT also shrink a prostate? Or not?
Posted 3/27/2016 1:37 AM (GMT 0)
Bob:

Could well be. All I know is that I was miserable with the BPH and wanted immediate help with that.

Again, that was sort of unique with my situation.

With the typical patient, BPH would not be an issue

Mel
Posted 3/27/2016 1:45 AM (GMT 0)
To attempt to clarify--and restate--my earlier comment that has been emphasized a bit....I note two things that have been noted many times before:

Because of the nature of this (and pretty much any) internet forum, the population seems to be self-selected to include (a) a certain type of individual who comes looking for us and is not representative of the entire PC population and (b) seems to be primarily populated by newbies looking for answers and those who are struggling with either advanced disease or unpleasant side effects of one kind or another. Those who came through without significant issues tend to drift away, having nothing new to say.

Also, I do suggest the population of this forum is skewed towards "radiation guys", even though for the population as a whole, it is skewed the other way.
Posted 3/27/2016 1:56 AM (GMT 0)
Halbert -- I've been here a few years and I've always felt the forum was skewed toward surgery guys. now, this thread seems to be skewed toward radiation guys but when I read the title I figured it would be -- i.e., I believe there's more guys that wish they would have had radiation treatment. I don't think I've ever heard a BT or IRGT guy say he wished he would have had surgery.

at first we all just want to be cured. it isn't till later that the regrets surface.

ed
Posted 3/27/2016 3:05 AM (GMT 0)
The BPH was the deciding factor for me , pissing every 2 hours night and day , couldn't tolerate flomax or cardura due to Bp medication issues. No form of radiation will improve the BPH. but if it wasn't for thàt radiation would have less effects. Trimix not a whole lot of sponaneity, sex life suffered for sure
Posted 3/27/2016 3:47 AM (GMT 0)
Had RALP Feb 2015. No incontenence or ED issues, undetectable PSA so far. No regrets. I think surgery guys to drop off the site after treatment more frequently as the results are known much quicker and more reliable than with radiation. More of the ones that do stay around are those that have SE's or a rising PSA.
Posted 3/27/2016 4:13 AM (GMT 0)
This is just my general impression, but I felt that when I joined in 2012, this forum was either pretty much split between surgery/radiation or maybe slightly leaning toward surgery. Subsequently, I do feel there are more radiation guys here. (Or perhaps, the more vocal guys are radiation guys.)

I also have a theory that since most newly diagnosed guys here are posting after their initial diagnosis (generally with a uro/surgeon) that you get a lot of radiation guys chiming in with a "that's somewhat true, but..." perspective. To that end, buy definition, the radiation guys are more vociferous since they're responding to the initial uro input. But very importantly, the discussion is more civil here than it was three years ago and I hope it continues to be that way.

BTW, this thread also re-affirms my overall impression that most guys (at least the ones on HW) are happy with their choices.
Posted 3/27/2016 12:04 PM (GMT 0)

compiler said...
GOP:

You say REALLY, but I suspect that's generally true, with some exceptions. If I was cured in 2009, I seriously doubt that I would be as involved in HW

Mel

Mel, maybe you would not but I would/am. I was cured in 2008 and stick around for a variety of reasons including the opportunity to give back to this forum for the help I received, my continuing interest in the friends I have here (like you) and intellectual curiosity about our disease. For example, I cannot even begin to express how much I have learned from guys like TallAllen, TonyC, Todd and many others. So, there are many of us who are here for some of the other reasons.


Jim
Posted 3/27/2016 12:14 PM (GMT 0)

halbert said...

Also, I do suggest the population of this forum is skewed towards "radiation guys", even though for the population as a whole, it is skewed the other way.

Halbert, you are relatively new here and I can assure you that has not been the case over the years. When I arrived here in 2008, members who even considered radiation were ridiculed by the surgery guys. And heaven forbid anyone think about AS or TFT...the surgery guys thought those were as outlandish as snake oil. I think with the proliferation of newly popular and effective radiation options like HDR Brachy and SBRT that men who visit this forum are seeing both the facts (as presented by smart guys like TallAllen) and the continuing anecdotal successes of the men who have had radiation. I don't know if the population of radiation guys at HW is a larger % than of the overall population but it is clear that they are generally happy with their choice and many of them have stuck around to share that. As long as it's all done in a respectful manner, then I think it's a good thing that the surgical, radiation and AS voices are all being heard loudly and clearly.

Jim
Posted 3/27/2016 1:25 PM (GMT 0)
Hi
I had surgery.
My biopsy showed Gleason 8 some samples 100%
RRP showed gleason 8 t5 =g9 in both cores 80% involved
Glad I had it out.
Salvage imrt.

Going on 10 years out.
aloha "oe
Best wishes to all the brothers
Gerry
Posted 3/27/2016 1:51 PM (GMT 0)
Tud:

I guess you are a better person than I am.

I am just being honest. I hope I have also helped folks and contributed to HW in a variety of ways.
I commend those who have been cured but have stuck around for many years, contributing to HW.

I'm sure I would have been around for a few years. But, I suspect if I was clearly cured, I would eventually want to put it on the back burner, and get on with my life sans dealing with PC, and that would include less time on HW. Even in my current state, I sometimes find it beneficial to step back from HW, if only to recharge my batteries!

I am also willing to bet that the VAST majority of folks who posted on HW, got lucky, had a tx., and were cured, are no longer posting. They may have posted for awhile, but then they just move on. Who are they? I have most assuredly forgotten their names!

Incidentally, some get cured and are convinced that their methodology is better than any other. They might stay on to make folks "aware" of these methods.

I also agree that when I got dx. in late 2009, surgery was indeed the gold standard and radiation was secondary (not quite snake oil, but not the preferred choice). That has changed, thanks to the improvement of techniques/delivery systems. I'd like to add, better marketing, too, but I'm not convinced of that. I see plenty of ads for Da Vinci and maybe some for cyberknife. But surgery seems to market their wares a bit better.

For those who have been cured without much doubt and have stayed, we owe you a debt of gratitude.

Mel
Posted 3/27/2016 2:09 PM (GMT 0)

compiler said...
Tud:

I guess you are a better person than I am.

Mel

Well, yeah...but I feel guilty reminding you of that turn

Seriously, I think in many ways it is a lot easier for me to stick around HW than it is for you and others who still have prostate cancer. I know that I am one of the lucky ones while you and others still have to struggle with this dam* disease. So when I am here it is almost like being on a forum where the discussion centers on an interesting topic rather than the so-very personal issue of trying to beat the disease. So there is really no need to step back unless it's that other interests were to supercede this one. At least I think that makes sense but no one ever accused me of being a philosopher.

Jim
Posted 3/27/2016 2:29 PM (GMT 0)
Tud:

To translate:

I AM NOT WORTHY.

So, that's it. I'm leaving

.
.
.

Ok, I'm back.

Carry on.

Mel
Posted 3/27/2016 2:46 PM (GMT 0)

compiler said...


I AM NOT WORTHY.

Mel

At last...I quote that I can keep forever. I'm sure you won't mind if I use this from time to time. BTW, the real reason I have stuck around all these years is that I like to delete posts. There, i said it. Please don't tell anyone. yeah

Jim
Posted 3/27/2016 3:28 PM (GMT 0)
Had surgery, and I'm happy with my decision, I'd do the same thing again.
Posted 3/27/2016 7:11 PM (GMT 0)
The Prat is Back??

Jim -- you do realize your job would be much easier if you deleted all posts/threads.

Mel, bucking for a Moderator job, but, unfortunately, I am not worthy
Posted 3/28/2016 11:55 PM (GMT 0)
You know what, Compiler...the more I think about it, the more I think you are right. It does indeed seem pointless to 'hang around' thinking that one can make a difference.
Posted 3/29/2016 12:10 AM (GMT 0)
GOP:

"It does indeed seem pointless to 'hang around' thinking that one can make a difference."

Do you always misquote folks?

Your handle is appropriate.

Mel
Posted 3/29/2016 1:01 AM (GMT 0)
Lidat, good to see you came back, ditto to Prato as you're both good for this place. For me, clearly BT and would do it the same way again. The back and forth going on right now about can I make a difference, used to think I could, but then I got tired of the challenges every time (by some, that were allowed). I still pay forward but with a different approach. At the end of the day we're all PCa Bro's (and sisters) and I wish all well.
Posted 3/29/2016 7:31 AM (GMT 0)
Mel, Logo is running for class clown, but I think you could give him decent competition.
You as a mod would be interesting, no doubt.
Without the occasional LOL, I doubt I'd hang around on this forum as much. If all I got out of being here were answers to my questions, I'd be email buddies with TA!
Beth
Posted 3/29/2016 11:01 AM (GMT 0)
In my mind, it's not a stretch to think that surgery may out number RT in the real world, but possibly reverse in here. The reason I think that (it's been my experience so far) is the Dx typically comes from a Uro. IMHO for localized, the Uro, unless you are in a Cancer Team Environment, will default to RP for a localized treatment plan. In my case, he told me he could not recommend RT without RP first. He was interested in RP with HT & EBRT. Strangely, when I actually got a copy of the referral report from my GP, his language was different in that he said he provided me with 2 treatment options (which is still very fresh in my mind, and clearly was not the discussion he had with me at the time). In fact the way he portrayed my PCa to me was "Due to your Gleason 8, you are in a high risk category, so your treatment options are limited".
Had I not found this site, I would have not been able to properly advocate for myself.
Clearly, the membership of this prostate cancer forum represents a very small percentage of the daily diagnosed, but luckily for the newbies, has a strategic group of very well informed, and experienced SURVIVORS who say the right things at the right times.

So gents......THANKS THANKS THANKS

Good reason to stick around is.....this is where the survivors are.
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