HealingWell
Search Close Search
☰

Anyone regret surgery?

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/6/2012 12:08 AM (GMT 0)
Let there be no doubt, surgery (either robotic or open) is not a walk in the park and it will take weeks to months to get back to normal. But, you are young - and you probably want to know exactly the extent of your disease. Only through surgery will know this.
Posted 4/6/2012 12:31 AM (GMT 0)
Well, I'll chime in as someone who does regret the surgery.
So far I've had zero's and continence since day 1 and that's all good.
But at 2 and a half years out it looks like my severe ED is permanent despite nerve sparing surgery.
If I could make the decision again i would go for the brachy.

Mike

Posted 4/6/2012 1:29 AM (GMT 0)
No regrets here.
Posted 4/6/2012 1:45 AM (GMT 0)
No regrets to be had.  I'm same age as you.  Biopsy had all cores involved 3+4.  Numerous Radiation Oncologists (including Johns Hopkins) all recommended surgery.  Helped make the choice easier when they are saying that's the right answer given my presentation.  I'm very physically fit and had full function before surgery.  All the docs asserted I'd have no problem with incontenance and they were right.  I'm now 10 weeks post RALP.  Less than a pad / day starting the day after catheter removal, off pads 5 days later.  I get the weird occassional drip primarily when passing gas, that's it.    First erectile nerve response was felt at 3 weeks post surgery while on Cialis (woke up with partial erection).  With Viagra I'm fully viable.  And of course the most important thing, 6 week PSA was 0.01.

My greatest recommendation is research your surgeon well and pick the best you are willing to get to.  My local Uro who is the best around here had 300 and does 1 or 2 / month.  Not on me thank you.  I was willing to travel anywhere to get the best.  Went to someone with over 5000 procedures and his whole practice is Prostate Cancer.  Given what they found in the pathology, I feel the choice to get to that level of experience made all the difference in my cancer free (so far, may it stay that way) and functionality.  He took 30% of the nerves on each side to get the margins given 70% and 80% involvement on either side by the nerve bundles.  He was able to do that and still spare enough of the nerves and not traumatize them too bad such that I'm getting response this early, while getting all the cancer.  I'd do the travel again in a heartbeat.

Best of luck to you.

Posted 4/6/2012 2:47 AM (GMT 0)
No regrets on open surgery.
Find the best Dr.
All the best!
Posted 4/6/2012 4:21 AM (GMT 0)
Well, there is no going back but since you asked and haven't decided, here goes. Over time I have realized that I simply didn't have enough info to make a properly informed decision. Both opinions were from Uros...what's an Oncologist? My head exploded, stayed exploded. Being single, I didn't have a partner to listen along and give me a little steerage. I had the Davinci, 8 day hospital stay. etc. I was in too big a rush to get it out. Had I taken the time and had much more info, I would definitely have gone for the high dose BRACHY therapy. Still leaking since the Aug surg, ED abounds.....Libido zero! Even though I have no prospective bed mates, I find it's a lot to lose all at once. It's possible that with the Brachy I would have had kinder, gentler SE. Like 142 said, this 65 yo guy doesn't see future prospects If I have to show up with my needle kit.

Rick
Posted 4/7/2012 1:09 AM (GMT 0)
Had surgery in November, 2009.  Went great, no incontinence at all, quick physical recovery, clean margins, clean seminal vessels.  Also, no erections after -- took a nerve bundle (I knew this going in).  Also, had to repair a surgical hernia after.  So surgery had some physical problems.  Also, and more importantly:

> Gleason upgraded to an 8 on post-surgery pathology.

>  Rising PSA seen only 18 months out of surgery.

> Doubling time (.07 to .13) in less than three months last summer.

> In four PSA tests between last July and November, PSA inched up each and every test.

So, I am just finishing 40 sessions of radiation and am in the midst of six months of preliminary hormone treatment.  Medical oncologist tells me that the odds of this first round of treatment holding PSA off for a significant time are no better than 30%.  I am in the highest risk category of dying from this thing within five years out from surgery (I am 2.5 years out now).

What seems to determine long term, post surgery outlook are three factors:  Gleason; time to recurrence; PSA doubling time.  Johns Hopkins published a study in 2005 or 2006? charting life expectancy based on these three factors.  You can look it up.

My combination is the worst Hopkins documented -- 10 year survival less than 1%. 

Ideally you want a Gleason of 6, recurrence after three years, and incremental increase in PSA, according to the Hopkins study.  Survival rate for 10 years in this category is better than 90%.

So, if I had not done surgery, but rather opted for radiation, I could not be in a more dangerous spot than I am now.  And I would have missed the side effects of surgery  -- ED and hernia.  But then, radiation is not without its potential nasty side effects.

No easy answer, I suppose.  I think the Hopkins chart lays out prospects better than anything I have seen.  Best wishes in your decision.

NewspaperLover

Age 68

DaVinci surgery, November '09

Gleason 8

PSA recurrence June '11

PSA:  07/11 .07; 09/11 .13; 10/11 .15; 11/11 .17.

Started hormone therapy (casodex + lupron).

12/11.

Started 40 session course of IMRT 03/12

 

Posted 4/7/2012 2:25 PM (GMT 0)
Short answer is no, I don't regret having surgery...  Will I regret the decision in the future?  I doubt it.  Like everyone fighting this disease we eventually realize there are no absolutes with PCa.  There are no guarantees, only probabilities, expectations and hope.  I know beyond any doubt I made the right personal choice based on the information I had at the time.

I believe the word "cancer" itself tends to make a person realize the importance of deciding how to fight their disease. Most of us understand there are no do-overs and the path we choose at the start (with various contingencies) is the permanent path we'll take.

Getting to the point of making the right decision for a course of treatment requires digesting a lot of information (reliable and trustworthy) and understanding the realities, limitations and reasonable expectations of the various treatments. 

For some of us, the options are narrowed by age, physical condition and progression of the disease.  But some of us were fortunate enough to be able to choose any available option.  I considered all options.  Each offered encouragement, but choosing the right one for me was an agonizing experience.

I gathered all the information I could.  I viewed the different procedures online and from DVD's from a surgeon and two urologists.  I consulted an Oncologist.  The Oncologist was the most valuable resource of all.  He scheduled the scans, biopsies and blood tests.  The first thing he set up was the cardio stress test to see if I was a candidate for major surgery.  He meticulously reviewed my records and family history.  Next he provided reliable statistics for the various options.  My Oncologist was honest and realistic about recovery and dealing with each treatment's side effects.  He gave me the facts about each treatment, including AS, and left the decision totally up to me. He referred me to specialists for consult and opinions.  In my situation, I leaned toward a possible cure over treatment.  I wanted the cancer gone from my body and wanted the chances for recurrence reduced as much as possible.  Others may think about maintaining their current sex life as much as possible and it overrides all other considerations.  Others may only look at side effects and take a pessimistic approach toward their risks.  Others may have only a couple of options to even consider. We're all different.

The bottom line is this: Get all the information you can and take your time deciding.  Study until you understand what's really important to you. Get second, third and fourth opinions if necessary (I did)... whatever it takes to know what the odds are.  Know what you want and need but be realistic about you can expect.  Don't lie to yourself and mentally insert yourself in the percentage that won't have a recurrence, ED or incontinence after surgery... or a progressive degradation for both after cryo or radiation. Hope is a healthy thing, but hope doesn't increase statistical probabilities or reduce risk.   Accept the reality that you may have to live with less than you hoped for.  I believe when you get to that point, you'll have peace with whatever decisions you make and you'll never look back. That's a good place to be.

best regards, hj

  

Posted 4/7/2012 6:07 PM (GMT 0)
Hi Gadget

I am answering on behalf of my husband who is young (46) and had RARP in Jan 2012. It's early days for us and we find out this week whether his PSA is low enough to avoid radiotherapy. Fingers crossed. He is 100% incontinent following complications after surgery, but ED not 100%.

He would definitely say surgery was the right choice (despite the issues). He is young, the effects of long-term brachytherapy are not known on the body as the therapy hasn't been around for long enough. He wanted it out.

He too was Gleason 8 with most of the 12 cores affected. It was bad and we had to do something about it. Fortunately, he was downgraded post-surgery to a Gleason 6. I know many surgeons recommend non-nerve-sparing at Gleason 8, but ours wanted to spare as much as possible. Thank goodness he did that in retrospect!

The surgery was OK , but he was one of the unlucky ones who had complications. In retrospect, we should have spoken to at least 2 more surgeons. I wish I had spoken to a Da Vinci specialist as well as to the English 'Messiah' of Prostate surgery. But it is very hard in this country to find out statistics or even any information on surgeons. I have found out so much in the 2 months following surgery and wish I had known what I know now before we made the decision.

So do your research, read lots of books, talk to anyone you know who has had PC about their experiences but please speak to at least 2 or 3 surgeons or 2 or 3 radiation oncologists before you make your choice.

Good luck on your journey.
Posted 4/7/2012 8:46 PM (GMT 0)
I'm glad I found this site and all of the responses. Although my PSA has been running a little over 4 since 2008, they finally decided to do a needle biopsy about 6 weeks ago and I found out that I have T2c; I had 8 out of 10 needles show positive and were graded at 3+3. I was given options of sugery or radiation and am leaning towards surgery just to make sure it is positively removed. Since I will be having it done through the VA, I imagine it will not involve the use of scopes. I've had many surgeries, but just don't know how the post-op and recovery will be like. I go back to schedule my treatment later this month. The posts I have read help me to understand what I may be in for.
Posted 4/7/2012 8:56 PM (GMT 0)
No regrets "yet", I wanted the fracken cancer out of body and as far away as possible. Six months post surgery and in the zero club now. I chose surgery after my urologist gave me a 98% curable rate. I WILL hold him to his word!
Posted 4/7/2012 9:12 PM (GMT 0)
In my opinion, JT is correct when he says this is not the best question.  It's an interesting question but probably doesn't give you any good data on which to make your decision.  Cognitive dissonance is certainly alive and well and the answers to any question like the one you posed are highly likely to be supportive of an individual's initial decision espcially when the decision is as important as ths one.  It is extremely difficult for a person to admit they regret such a key decision unless the outcome is terrible.

This thread is instructive however in many ways.  People say they wanted surgery because they needed to know the final pathology.  However, few men make active decisions based on that pathology alone - instead taking an "active surveillance" approach and seeing if post-surgery PSA rises.  Others use the time worn excuse that they wanted a "backup plan" if surgery failed.  Of course, there are equally good (but different) backup plans for failed radiation treatments but this information is often not made available to the patient if only dealing with a urologist.

Finally, the thread is interesting is that it gives different views of success.  Some men view success as "cancer free" at some point in time, irrespective of loss of quality of life.  Personally, I viewed success as cancer-free PLUS normal urinary and sexual functionality.  Anything less would have been only partial success (or partial failure if that phrase suits you better).

Anyway, my bottom line on this is interesting but not actionable.

Best of luck,

Tudpock (Jim)

Posted 4/8/2012 4:11 PM (GMT 0)
No regrets on surgery.

I was 59 years old when I had my prostatectomy in early 2007, then went on Lupron (Eligard) and have stayed on since. Turns out the pc had already micro-metastasized, but the "campers" hadn't found a good "campsite" until a few months ago. I had a re-grown prostate-bed tumor radiated, but now found out I have multiple bone mets. I have been "Provenged", but am not confident that it or ANYTHING else can stop my Gleason 9+ monster from having its way with me.

The surgery took away a huge mass of cancerous stuff (no regrets there) within me. My sex life has been at -273C (ABSOLUTE ZERO) since the surgery, which was a deep concern for a short while, but it was a trade-off for the extended years of togetherness my spouse and I have enjoyed since 2007. Though I cannot "prove" it, my innate sense of destiny tells me I would not be alive to write this had I NOT had the prostatectomy.

Posted 4/11/2012 8:57 PM (GMT 0)
No regrets! I HUMBLY share our positive results thus far being fully aware that others may not feel the same nor be at the same place: 100% continent, complete success w/VED as of yesterday, and PSA <0.1 at 9 weeks post op. It has not been easy by any means, but we are walking this out together. This is where we are today, and trying not to worry about tomorrow...
Posted 4/12/2012 12:32 AM (GMT 0)
Gadget, I'm 44 and had robotic surgery 4 months ago. I had 1 of 12 cores positive with a Gleason 4+4 and that number 8 had me scared! I thought and researched alot, met with the radiologist but decided at 44 I'd rather remove the prostate and know it was gone. Like others I did like the idea of having the prostate looked at again once it was out. My post-op pathology was 4+3 and all confined with no positive margins. I was dx in September and knew the path I wanted to be on by mid October. My Uro / surgeon was great all the way from telling me my biopsy was positive to now.... Being 100% comfortable with him and his team helped alot! Still today I use a pad and most days only a few drips, my doctor said to switch to extra thick briefs which I haven't done yet. The Ed is still an issue but it works! Tried the cialis and didn't give it enough time to work.... It gave me some headaches and indigestion but just today I started again and I'm gonna use all I have and see what happens, I also has some viagra that I haven't used yet. For me the pad is no big deal at all but I woud like the Ed to get better and I'm sure it will. No regrets and after 3 months entered the "0" club, I wish you the best with your decision and it's nice to know that you do have choices, I know for me it was alot easier to move on once I decided on a treatment. Jeff
Posted 4/12/2012 3:02 PM (GMT 0)
Things I regret about my surgery:

1.) The catheter sucked ... and post-op recovery was in general a pain ... took a couple of months before I was back to normal.

2.) ED - taking pills and the use of Trimix

3.) The incisional hernia (and subsequent surgery) that came along six months later

Things I liked about my surgery:

1.) PSA has been non-detect

2.) No incontinence

3.) Once the large prostate (70 grams) was removed, I no longer had to get up three times during the night and when I did urinate I could do so in 10 seconds ... not ten minutes ... no more dribbles.

4.) The post-op pathology report ..... this gave me a very clear understanding of my cancer .... based on information I have gained on this site I find myself going back and re-reading my report.

5.) I did like the "idea" of having the cancer removed from my body, and not radiated (or frozen) and remaining in my body.

6.) Post-op dietary and exercise changes ... I'm in much better physical shape and cardio shape than I was three years ago.

 

Posted 4/12/2012 5:52 PM (GMT 0)
Question back to gadget: I thought your original question was intended to be different than the question that most people seem to be answering.   Only you can tell exactly what you had in mind. Your originally worded question was:   “ Are there many of you out there that wish you had NOT done the surgery? ”     But there was also lots of context provided in the rest of your post, which I address in discussion, below. There are two (or more) possible ways to interpret your question: (1)   For men with Gleason 8 (in the “high risk” category, and therefore with a higher probability of the PC not being locally contained ), are there any men out there who elected to go with surgery as their primary treatment but then regretted that decision because surgery only addresses “localized” PC.   In other words, if you had it to do again, would you go with radiation as the primary treatment mode? I thought that this was what your question meant because among the sub-set of “high risk” men ( like you ), more choose radiation over surgery as primary treatment to try to concurrently fight possible “locally advanced” PC (which is more often present but unseen in “high risk” cases).   Some men with “locally advanced” PC are able to successfully manage their cases through radiation, and avoid the invasive surgery and all of it's ramifications altogether.   Your post specifically addressed pondering throwing “ the kitchen sink at it ” with primary surgery, secondary radiation, plus systemic treatments (chemo, HT).   It appears that many responses in this thread are answering a different question; a question which would seem un likely to have come from you (“high risk”), but would have more likely been asked by a “low risk” member at HW who might be deciding between a conservative approach (like AS) and an aggressive approach such as surgery (there are, of course, many more “low risk” men than “high risk” men in the "PSA-era").   It appears to me that many interpreted your question to be something like this: (2)   For men with “low risk” cancer who choose to have surgery, do you regret seeking an aggressive treatment with the accompanying side effects for what might have been indolent PC?   I may be off-base (and maybe it doesn’t really matter), but I thought you were asking a question similar to what I hypothesized in (1), but most replies appear to be in response to my hypothesized question (2).   Many (not all) of the responses you received are related to side effects rather than secondary treatments .   In your case, gadget, I thought you would be very interested in secondary treatments related to question (1), and perhaps only coincidentally interested in (2) to the extent that it might apply to other friends or family members who you may be giving inputs to about PC based on your “experience.” On the other hand, maybe it doesn’t really matter given JohnT’s point on the cognitive dissonance which is a variant of the “Stockholm syndrome” (click HERE for Wikipedia descript ion). I just thought it appeared to be "ships passing in the night" with regard to the original question asked vs. most of the replies posted...     edit:  tweaked wording for clarity...maybe? Post Edited (Casey59) : 4/12/2012 12:14:54 PM (GMT-6)
Posted 4/12/2012 7:02 PM (GMT 0)
Thanks Casey - honestly I'm sort of amazed at the response to the question - and yes I guess to be honest I am more interested in those in the High Risk category and if they regret going through surgery. Although as I'm learning, every single case of pc seems to be different and they each follow their own path. It has been informative to hear from guys at all ends of the risk spectrum - I mean there are guys that were 7's that failed quickly and there are guys that are 9's with more cores that have stayed undetectable, so who knows.

I should also update with some other news - I sent my slides (NW actually only sent the one positive slide) to John's Hopkins and they came back with a 4+5=9 and 40% involved - so if they are correct, it's worse - and who knows about the other 12 cores since they were not sent.

I do hear that there is some benefit with de-bulking the tumor and so far mine seems to be contained and small - so even with high risk it seems surgery is of benefit (remember this was my second biopsy, so I don't expect that it's all over the gland).

There's no way of knowing and it just boggles my mind that there isn't more sensitive testing to determine the spread - I mean it seems like it has to be way down the advanced path for the bone scan to show. I'm on the fence though and know I'll be pretty bummed if I go through surgery and find my PSA rising a month later - that would be my bigger regret.

I really do appreciate all the feedback - it's sooooo good to have somewhere to just ask!
Posted 4/12/2012 7:07 PM (GMT 0)
The only regret I have is having been diagnosed with prostate cancer.

I am glad I had surgery even though it took some time to recover. More options were available after my pT3b was discovered and I am glad I addressed it early. So far so good...

Tony
Posted 4/12/2012 7:31 PM (GMT 0)
Gadget,

I think what most of us are telling you is that with PC and its treatments there are no guarantees as to the outcomes, only statistics based upon outcome research. No two of us are identical in our journeys so all we can offer are opinions based upon our personal experiences with the beast.

The best advice is no matter what decision you make, find or seek out the best medical professionals with the most experience in your treatment that you can afford. This may be the one variable we control  that can make outcomes better or worse.

Terry

Posted 4/12/2012 7:40 PM (GMT 0)
Tony, you just said:

"The best advice is no matter what decision you make, find or seek out the best medical professionals with the most experience in your treatment that you can afford. This may be the one variable we control that can make outcomes better or worse."

That is still great general advice, be kind of hard to argue that point, but in fairness to someone new, even that isn't a guarantee of great results. I could name names, but we have had several here that did all these "right things", i.e. got mutliple opinions, had their slides re-veiwed, went to one of the "best doctors" and still had poor results.

I still see this curse we call PC a very individual disease, and outcomes will always be difficult to determine in advance.

david
Posted 4/12/2012 7:50 PM (GMT 0)
Purg,

You are correct choosing the best doctor in the world doesn't guarantee the best outcome, but it is the one variable we control and your odds are better than going to an inexperienced doctor with very little PC treatment history.

Terry

Posted 4/12/2012 7:51 PM (GMT 0)
Of course, David.....sometimes the cancer wins.

That's why nobody's nomogram is 100.0%...which is why it's important to "stack the odds in your favor" by doing the things within one's control to help improve outcomes.
Posted 4/12/2012 11:11 PM (GMT 0)
Gadget

Sorry for joining this thread a bit late.

I have no regrets ....yet. Even though I am still just getting partial erections, I am hopeful for further improvement, but to be realistic, my best "sex" days are over at 60 and were over before my surgery. Also, I have been relieved of the symptoms that come with benign enlargement and only get up once a night now for a pee. If I had been 20 years younger on diagnosis I may have made a different choice.
✚ New Topic ✚ Reply
12