I’m now feeling like surgery was the wrong option and a huge mistake for me.
Surgery Option : I’m now feeling like... - Advanced Prostate...
Surgery Option
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Geno2853
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Ok. Y.
Can't say that surgery was a huge mistake unless there was something about it that caused the prostate cancer to spread. I've always been concerned about that aspect, though there is very little literature on it.
On the other hand, radiation has become so advanced that I think there is a possibility that sometimes it cures, even just outside the prostate, or in the pelvic lymph nodes, if done very, very early. So maybe that's what you mean.
I’ve had surgery and don’t regret it at all. Why do you think it was wrong?
My conversations with the surgeon who removed my prostate. He’s a surgeon. Of course he’s going to steer me to surgery, despite the likelihood the cancer had spread beyond the prostate. Radiation immediately followed the surgery. Now, my PSA is rising and I’m getting more radiation. My incontinence is worsening. My sessions with the pelvic floor therapist aren’t helping. In retrospect, it’s looking a lot like surgery was the absolute wrong choice.
your bio says you had surgery over 10 years ago. Isn't incontinence now from radiation? the radiation that may have given you that 10 years prior?
Maybe. Latest thinking seems to be that likelihood of incontinence is greater with surgery. Latest thinking seems to be that, with a high Gleason, radiation and not surgery is the way to go.
I believe the idea is with risky cancer and limited spread radiation may be similar to surgery but without the surgery risks. However in your case you may escaped surgery problems, yes, and got side effects from salvage radiation - which you may have had issues with anyway if you went for original radiation as primary response. I do not believe radiation improves recurrence odds, high risk cancer has its own high recurrence probability.
"Radiation immediately followed the surgery". What would you expect after that? Healing time min 6 months, more safe after 9 months.
I still trust, that reducing the tumor burden can be helpful. To be incontinent is sometimes tough but surviving is more important (for me).
why was it likely the cancer had already spread?
I’d be careful with the remark about “He’s a Surgeon…” I ended up seeing 4 different surgeons who I wanted desperately to remove my Gleason 9 prostate! I finally listened to the 3 NYU Urologist who refused to operate! Dr. Lepor succinctly put it…”I don’t operate on patients who I know are going to be worse off when they wake up from my procedure than before!”. I had a lower anterior resection and radiation (5580 rads) 30 years ago for stage C rectal cancer.. I was assured due to my treatments, with a prostatectomy I would need a colostomy due to adhesions from my rectum to my prostate, and they were not sure if they would be able to mobilize my bladder enough to reconnect my urethra once my prostate was removed. So, not all surgeons think that surgery is the only or best answer…
I regret decisions I made too but, at the time they seemed right for me. We can’t do anything about them now. Just do the best with the current situation and make the most out of the time granted.
my expectations were based on what my physicians told me to do. Surgery was on April 3, 2013. Radiation began July 6, 2013. What else was I supposed to do?
Radiation 3-6 months after surgery when needed (and it so often is) has been a standard recommendation for years. Don’t let anyone tell you it was some error in judgement on your part.
I had had TURP (roto-rooter) surgery for BPH 10 years prior to being diagnosed with prostate cancer. I was told that as a consequence of that I was not a good candidate for RP for my Gleason 8 cancer. I was glad of that. RP is the most invasive treatment and I was afraid of the possible quality of life consequences. As you mentioned, urology surgeons do surgery. It's what they do. It is what they will steer you to, usually. I was steered toward external beam radiation but elected to go with HIFU instead. 7 1/2 years later I am doing OK but my PSA keeps creeping up. I am going for an MRI in less than a week. I haven't been on ADT in 7 years. You followed your doctor's recommendation. That's the thing about this disease -- we are forced to make treatment decisions when we are the least informed. You weren't wrong to follow your doctor's advice, you just weren't aware of other options.
I am right with you. I only wish I had educated myself fully before RP. I don’t think about that part anymore.
Surgery is inferior to modern radiation. I had my surgery in 2019. Despite probably of microscopic spread I decided on it anyway. My surgeon did not try to talk me into it, but he did tout the information ‘you can only get from the surgical pathology’ and warned you couldn’t get surgery after radiation if that failed. That is false, although admittedly they may have been justified in still believing it at the time.
However, they knew from the MRI guided biopsy my insurance wouldn’t pay for that my disease was right up against the capsule and had almost certainly escaped and spread, at least to the seminal vesicles and lymph nodes. It had.
Like so many, I bought into the layman’s notion of ‘getting it all out’. So, so often they do not.
The surgery and what followed left me incontinent, with a smaller, thinner penis and completely impotent. I needed plenty of follow up treatment including surgery including radiation 5 months post op. An additional surgery to address the incontinence followed that.
Statistically the total incontinence after RP is uncommon. The ED is extremely common, and I had superb function before, rehabbed after etc.
The good news? My PSA has been undetectable since the surgery in 2019, and for 3 years since full return of testosterone. My gratitude knows no bounds.
Still, my view is that surgery was a mistake for me. IMRT with brachy boost and the same course of abi and ADT would have very likely produced the same results-also very likely without the incontinence and total ED.
I encourage you to not look back with regret, anger etc. You were advised by professionals, and took that advice. Hopefully you learned a lot along the way. Onward!
Recent studies have shown brachy boost to have superior cancer control rates compared to surgery or standard RT. RT with focal boost to primary tumor(s) has also shown encouraging results. However, the surgery doesn't come with the negatives of the ADT that is part of RT for many higher risk patients!!
ADT is part of high risk patients too. Treating high risk with surgery only is sometimes presented as an attractive option, or is insisted upon by patients. It usually fails and they then need radiation and ADT anyway.
ADT is not SOC for high risk surgery , though I know it can be used . In comparisons, surgery without ADT has proven equal or better than RT + ADT...I believe it is the Ascend study. That is one reason my RO , upon hearing my fears about ADT, suggested I would also be a good candidate for surgery...no ADT. Gleason 9 diagnosed 3 years ago....just now doingtreatment.....PSA rose from 8 to 13 over 5 years, and increased PSMA PET uptake in prostate , and tumor in prostate now larger. I will have focal boost RT.......good results in at least one trial...hit the PIRADS 5 lesion hard......RO says lesion is in a good position for the boost?
So you have not had surgery. This is correct?
Me? No, as described , nothing for 3 years, but now signs of tumor growth have resulted in agreeing to damned ADT + focal boost RT + whole pelvic RT. OMG!!!
At least you’re not getting surgery so that’s good. You used the term ‘high risk surgery’, which doesn’t actually exist. It seems inadvertently humorous, albeit darkly so. Surgery itself is indeed a high risk choice-especially for high risk men.
If you consider that recurrence after RP happens 30% of the time on average, and that includes many low risk patients, what do you figure the high risk patient failure percentage is? Pretty sure it’s significantly higher than 30%.
It's not going to help us having regrets.I feel same about chemotherapy......so I do understand.
But that feeling of regret isn't helpful, it may have been the thing that cured or helped you.
We only know if we tried it.
We took the information we were offered at the time and we made the best decision at the time for us and our families......
We did our best, with what we could.
Don't let regret linger.....
Your bio says you had surgery and radiation in 2013. Why both?
Because that’s what they told me to do. At this point I remember exactly what they said. Probably they didn’t have “good margins.”
It sounds to me like 'salvage radiation'. Did they express it in those words?
Don't be so hard on yourself. The prostate biopsy itself is known to release cancer cells into the circulation. You can look this free article up online yourself by typing the title into a search engine: To Be Taken in Count: Prostatic Tumor Cells Break Free upon Needle Biopsy (this is why I look forward to the day when diagnosis can take place without a biopsy).
That seems… unlikely.
PSMA-PET scans could be a solution (and a lot cheaper than a biopsy). Search this title: Clinically Significant Prostate Cancer Diagnosis Without Histological Proof: A Possibility in the Prostate-specific Membrane Antigen Era? (that combined with a prostate MRI with and without contrast should be enough).
Why do you say that? I've read several articles of a blood test that gives equal results to a needle biopsy - except for location data, which can be had with a PMSA-PET scan.
I had the robotic RP in 2021 and do regret it. The reason I regret it is that I was right on the cusp of when there was enough long-term and numerical data to show that the radiation option was as good if not better. I had one friend who had done the surgery (impotent and incontinent)and ardently pushed for radiation. But had several other friends who had had the surgery and claimed to be side effect free. My urologist also gave me a ton of literature that said focused radiation was still a big question mark And broader radiation was the gift that keeps on giving, meaning it side effects would show up later. He, my PCP and a sharp friend I trusted all called surgery “the gold standard”. And my surgeon bragged about his stats (which TA has said is a red flag, and he’s right)
For you 10 years ago the apparent argument for surgery must have been overwhelming. Only guy really in the know would have been able to find really good ROs.
A friend tipped me to this site, and Tall Allen, and two friends have already benefited from TAs expertise and generosity.
I too regret the RP, especially since the surgeon kept glibly saying “You’ll be fine!!!” But mostly because it became clear shortly thereafter that focused radiation etc was as good or better. My SE outcome wasn’t bad, but it wasn’t what he claimed it would be. (And I’m looking into Trimix, but having trouble getting a Rx). I guess my cathartic response is to send friends to this site. And possibly frustrate a few self-interested surgeons. 😇
Ten years ago was a different world. You’re not to blame for your choice. It’s a whirlwind of conflicting conflicted opinions out there. TA is like an oasis in a swirling desert
Anyone undecided about the choice between surgery and radiation should read Dr Scholz' book "Invasion of the Prostate Snatchers". As the title amusingly indicates he is not an advocate of surgery.
He’s got a nice lecture in YouTube, too.
With the gift of hindsight, you could apply that way of thinking to most decisions you've ever made. Thing you have to ask yourself is, with all the information you had , and from everything you understood at the time, did you make the wrong decision? Even if it was the wrong choice, that's the way the sausage rolls sometimes.
You can't beat yourself up for an specific outcome. All you can do is just try to deal with things in your control right now.
Geno -- today is the first day of the rest of your life. You've made it 11 years with PCa. That's a lot more than many get.
I decided RP over radiation- I think back to when the RP surgeon stopped by afterward in 2021 and said “I’m satisfied with the surgery” - not an overwhelming endorsement for #1 at Hopkins, then he asked “Do you want follow up radiation to help ensure the results?” He didnt talk to me about the pros and cons- nor had any one brought this up prior! So I said “no” Two years later my PSA started drifting up and the PSMA and MRI pointed to early tumors at T10 and hip bone. WHAT? Now on hormone therapy with ED because they cited additional spots in MRI near the sacrum and radiation not practical. Did some of the cells escape before we got to the RP and if so would radiation have. been better? Did my biopsy in Nov 2020 release those cells? I will never know but doubt there was a way to know. Agree today is the first day of the rest of our lives and we have to work with what we have. Good luck.
A bit of advice for everyone: Never second guess your decisions: NEVER!
You cannot know how the other choice would have turned out!
Well back in 2002 when I had my RPD...... The medical "experts" touted that chest X-Rays and Airplane flights and Dentists were killing us with X-Rays, so who wouldn't choose a RPD over getting fried?.
Don't look back, you'll only see your ass behind you....
Anyone remember: When were X ray machines were removed from (Thom McAn) shoe stores?
Shoe-fitting fluoroscope - Wikipedia
Shoe-fitting fluoroscopes, also sold under the names X-ray Shoe Fitter, Pedoscope and Foot-o-scope, were X-ray fluoroscope machines installed in shoe stores from the 1920s until about the 1970s in the United States, Canada, United Kingdom, Australia, South Africa, Germany and Switzerland.
Good Luck, Good Health and Good Humor.
j-o-h-n
In my case - the shoe store sold Buster Brown's the Shoe with the dog inside! My mother was the thrifty sort, so she saw no reason to try out the Foot-O-Scope, and we ended up finding some sort of seconds (in shoes!) at John's Bargain Stores (where it is never "perfect" but it is "good enough")..
for future reference…..you might want to provide a bit more info in a post so that folks have something more specific to respond to…….
I rarely reply as there is extensive info from people far more knowledgeable, but many of us here have wasted quite a bit of time second guessing treatment plans. RT was our chosen course, BUT at the time no hormone treatment was recommended. Studies later validated the benefit of adding ADT. As PSA rose, we spent too many hours being frustrated that the RT only path was not the best choice. Finally accepted we all do the best we can with the information we have at the time.
The thing to look at IMO is the fact that even today with all the new discoveries and treatments, the disease is still basically unpredictable (thus the never ending PSA tests). So how in the world were we suppose to know what to do (I had RP in 2012) 12 years ago ? You did what you thought was right at the time .....don't look back.
back in 2001 I was first diagnosed and started meeting with fellows us too One of the moderators advised that after the definitive treatment decision has been made to avoid second guesses and look forward
my Gleason score was seven. One of the dozen or so articles I reviewed before electing a course of treatment was by Patrick Walsh, who with that time, was not recommending surgery for those With a score of seven or above. The receiver operating characteristics suggest a day better than 50% probability of recurrence within five years
So I elected Brachy boost therapy, which was novel and controverdial at that time and had an 18 year remission with undetectable PSA and no significant urinary or sexual side effects
unfortunately, as Dr. Bryce pointed out to me recently at Mayo Phoenix, recurrence appears to be almost Inevitable
No treatment is perfect and no cancer is “the same“ as anyone else’sGive yourself a break and look forward surgery radiation and chemotherapy have all advanced so dramatically in the last 10 years even that we all have a chance to die of something else
"we all have a chance to die of something else" - exactly my plan! Stress test tomorrow.. who knows if I'll make it out (had a friend pass away during one.. bet that surprised the techs doing it..)
Not to worry.
The mortality rate during exercise stress testing is exceptionally low, at 0.0007%. The statistic states that the mortality rate during exercise stress testing is extremely low, with only 0.0007% of individuals experiencing death during the procedure.
Good Luck, Good Health and Good Humor.
j-o-h-n
Good for them. I'm doing the drug one.. there is no way I can run on a treadmill for more than about 30 seconds. Then they'd have to help me off the floor as I shot off the back of it..
j-o-h-n - some quotes returned by Google:
"Pharmacological nuclear stress tests are typically safe" - Cleveland Clinic
"Pharmacological stress testing is a relatively safe procedure" - NIH
"Stress tests are generally safe procedures." - Stanford
Note some "hedge" words there?
The Ai thingambob said in response to the question "mortality during drug stress test":
"The annual death rate for patients with a normal stress test is about 2%, and 3% for patients with an abnormal stress test. The risk of death after a stress test is about 1 in 10,000, and the risk of death or heart attack during a treadmill stress test is about 1 in 5,000. The risk of death after a stress test can be up to 3 to 5 times higher for patients with acute chest pain. "
If I understand this dribble correctly it's saying
1 - The annual death rate for people who had a normal stress test vs people with an abnormal stress test is around 1%. This really doesn't mean a lot - 1% is in the noise - and what it's saying is less healthy people die more frequently then really healthy specimens. If you flunked the test - hey - you're 1% more likely to die in the next year.
2 - The risk of death after the test is 1 in 10,000, the risk during a treadmill test is 1 in 5,000, which means you're half as likely to croak after finishing the test as while you're doing the test. Dunno about you - this seems to be totally useless information.
3 - If you're having acute chest pains it's possibly not the best time to take a stress test (duh..) Or mebbe if you're having acute chest pains you're more likely to croak? duh again.
Ain't AI just great? 🤑
I subject myself to a stress test three times a week. It is called the stair climber. I do intervals: 1 minute or so intense, a minute easy pace to recover, rinse and repeat.
I live in the Phoenix metro area and so have easy access to Mayo. What is your opinion of Dr Bryce? Is he a urologist or an oncologist?
he is a medical oncologist that left Mayo and is now with the successor to Cancer treatment centers of America. Well dressed well spoken and knowledgeable. He had nothing to offer other than the medical castration that I could have received from my radiation oncologist. The facility is very pleasant and extremely efficient reminds me of a well run factory lab results are available within 15 minutes. The 12 months of androgen deprivation with enzalutamide (that I began with my radiation oncologist)was a “complete response” I am continuing with them for three month, follow ups and also follow up every three months with my radiation oncologist who does a thorough physical examination on every visit Other than height, weight and blood pressure, Mayo never conducted any physical examination
It’s always hard to know what is the “right” decision. My dad chose radiation. Three years later he was in hospital paralyzed from the waist down and dying. Granted that was in the dark ages of prostate cancer treatment but I opted for RP when my turn came. My surgeon bragged that his guys were continent at 3 months. In my case, it was true. I then had RT and ADT, which I’m still on, and I’m still continent. It’s been 3 years since I finished RT. Who knows what the future will bring. It’s funny, I always expected that I would get PC but was totally unprepared when it actually happened. My choices were made very quickly without much consideration. Diagnosed in late June 2020, prostate in a jar July 14th radiation completed Feb 2021. So far, so good. I don’t regret my choices even though sex is a distant and vague memory. If I had done a bit more research and moved a little more cautiously might I have gone a different route? I don’t know, maybe, but none of us gets a do-over. I’m still alive and, at least for now, that’s good enough for me.
I'm sorry to hear you're struggling with this. Are there specific problems that you're trying to manage? Doctors can help with many of them.
Treatment regret is a common thing. The whole cancer experience is upsetting. We all have to make our best assessment of the treatment plan for us, and then roll the big dice. Sometimes things don't go the way we had expected, and that can be difficult.
I hope you can find relief for what is weighing heaviest upon you right now!
I chose RT but still got advanced cancer. I suspect the biopsy.
How’s your incontinence?
A bit down, not much problem.
Mine is worse. I had RP followed by what I think they call adjuvant radiation.
For high risk patients, RP only yields about a 50/50 chance at cure at best. Rad is superior.
So every other patient that they STEER towards RP has recurrance….
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