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Complications after surgery, in germany

hopeful and opt...
Posts: 2226
Joined: Apr 2009

This article, (Repeat prostate biopsies do not raise the risk of post-prostatectomy complictions) found on page one of the Feb 2018 ustoo hotsheet mentions information that have been a focal of discussion at this board:

"Results showed that 45.9%, 57.9% and 60.9% of men achieved potency at one, two and three years after RP, respectively"

and, " UI (Incontinence) rates followed the same trend: By one, two and three years after RP 87.9%, 90.9%, and 91.9% of all men, respectively, had achieved continence"

 

With respect to ED, MK1965 when he talks about ED after surgery that happened to him and to many,  is NOT out of line when he refers to the subject since in this article ,  over half experience ED after one year, and 40 percent still after 3 years.

 

Note:

The HOTSHEET is published monthly by the USTOO organization, and is available on the the internet, as well as in print form, that is available at most local meetings sponsored by ustoo organization. If you are interested in building your knowledge I recommend that you regularly read this publication.

MK1965
Posts: 178
Joined: Jun 2016

Thanks for sharing.

Also attended this month TX US TOO support group meeting and also got February HOT Sheet issue and read article you are talking about. As you mentioned, it happens way more often then guys on this forum want to accept and stop bleming mental issues as cause for all unsuccessful RP. My case is not “worst” as someone called it. It is one of many and it happens that I am very openminded person who talks about it without shame. I lost ability to achieve erection, I lost length, lost QOL, and all of that derailed  my relationship.

Sometimes, no treatment is best treatment. Rushing and listening to others is never good. Treatment choice should be each one own choice.

MK

VascodaGama's picture
VascodaGama
Posts: 3031
Joined: Nov 2010

Just adding to your thread an article on an ED study indicating that "Aspirin were Found Effective for Erectile Dysfunction".

https://www.renalandurologynews.com/erectile-dysfunction-ed/aspirin-erectile-dysfunction/article/740011/

 

Grinder
Posts: 441
Joined: Mar 2017

 Effects of prostate biopsies on functional outcomes after radical prostatectomy

 

Highlights

 

Repeat Bx compared to single Bx has no influence on erectile function after RP.

Repeat Bx compared to single Bx has no influence on urinary continence after RP.

AS patients can be consulted that repeat Bx do not result in worse functional outcome.

 

Abstract

Purpose

Growing acceptance of active surveillance (AS) results in a relevant number of patients who will undergo radical prostatectomy (RP) after multiple biopsy sessions (Bx) due to cancer progression. The effect of repeat Bx on functional outcomes after RP remains controversial.

Methods

Overall, 11,140 patients who underwent RP from 2007 to 2015 were analyzed. Number of Bx sessions (1 vs. 2 vs. ≥3) before RP was examined. Association between number of Bx sessions and erectile dysfunction (ED) and urinary incontinence (UI) was assessed by univariable and multivariable logistic regressions.

Results

A total of 9,797 (87.9%) had 1 Bx, 937 (8.4%) had 2 Bx, and 406 (3.6%) had 3 or more Bx. Median age was 65 years (IQR: 59–69). Increasing Bx sessions were associated with advanced age at surgery (1, 2, and ≥3 Bx: 65, 65, and 67 years, P<0.001); 982 (45.9%), 906 (57.9%), and 597 (60.9%) patients achieved potency at 1, 2, and 3 years after RP, respectively. On adjusted analysis repeat Bx compared to initial Bx had no influence on ED at 1, 2, and 3 years. At 1, 2, and 3 years after RP, 6,107 (87.9%), 4,825 (90.9%), and 3,696 (91.6%) patients achieved continence. Number of Bx session had no influence on UI at follow up.

Conclusion

Our findings demonstrate that ED and UI rates are comparable among patients undergoing RP after initial and repeat Bx sessions. This is of importance when counseling AS patients. No adverse functional outcomes are expected if AS has to be discontinued and RP as curative option is contemplated.

Grinder
Posts: 441
Joined: Mar 2017

stract

Purpose

Growing acceptance of active surveillance (AS) results in a relevant number of patients who will undergo radical prostatectomy (RP) after multiple biopsy sessions (Bx) due to cancer progression. The effect of repeat Bx on functional outcomes after RP remains controversial.

Methods

Overall, 11,140 patients who underwent RP from 2007 to 2015 were analyzed. Number of Bx sessions (1 vs. 2 vs. ≥3) before RP was examined. Association between number of Bx sessions and erectile dysfunction (ED) and urinary incontinence (UI) was assessed by univariable and multivariable logistic regressions.

Results

A total of 9,797 (87.9%) had 1 Bx, 937 (8.4%) had 2 Bx, and 406 (3.6%) had 3 or more Bx. Median age was 65 years (IQR: 59–69). Increasing Bx sessions were associated with advanced age at surgery (1, 2, and ≥3 Bx: 65, 65, and 67 years, P<0.001); 982 (45.9%), 906 (57.9%), and 597 (60.9%) patients achieved potency at 1, 2, and 3 years after RP, respectively. On adjusted analysis repeat Bx compared to initial Bx had no influence on ED at 1, 2, and 3 years. At 1, 2, and 3 years after RP, 6,107 (87.9%), 4,825 (90.9%), and 3,696 (91.6%) patients achieved continence. Number of Bx session had no influence on UI at follow up.

Conclusion

Our findings demonstrate that ED and UI rates are comparable among patients undergoing RP after initial and repeat Bx sessions. This is of importance when counseling AS patients. No adverse functional outcomes are expected if AS has to be discontinued and RP as curative option is contemplated.

Grinder
Posts: 441
Joined: Mar 2017

After consulting the actual study instead of the ustoo article, please note this was a sampling of 11,140 patients in one clinic in Germany. 

The incessant disregard of variables when researching ED after RP in this forum is disconcerting. Even this study emphasizes the importance.

The goal of this study was to test correlation between multiple biopsies and ED after RP, not to establish frequency of ED after RP. Not to mention it was a very small statistical sample of one single clinic in a European country. Not to mention it does NOT diffetentiate between open surgery, robotic surgery prior to DaVinci, and DaVinci nerve sparing surgery under the umbrella term RP.

For some reason, you continue to paint us as the bad guys when we insist on accurately assessing what happened to MK rather than apoealing to emotions of disappointment and outrage.

The problem remains... What was the variable between Cleveland's successful surgery and MK's unsuccessful surgery? 

If you want to help patients in the future decide their best course of treatment, then we have to know that that variable is, and not condemn RP wholesale. Instead future patients are warned to shy away from RP, and we are reprimanded as if we are paid consultants for a urology scam getting paid for referrals. 

No, I just want to know what the variables are so future patients  make an informed decision.

Grinder
Posts: 441
Joined: Mar 2017

After further study, i was wrong.

They do list the types of surgery under the umbrella term RP. 

81.8% of the patients in the study had OPEN surgery.

18.2% of the patients in the study had robotic nerve sparing surgery.

draw your own conclusions.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Quote from this  study, "  Data show that 60% of men report ED 18 months post-operatively,[5] 20% report erections strong enough for intercourse at —5 years of follow-up[5] and only 20% of men return to pre-operative erectile function at —1 year post-operative"

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4220385/

 

........................

If you wish I can add other studies.

 

Grinder
Posts: 441
Joined: Mar 2017

I do not need to follow up every study you post. If you were doing journal research for a n institute you would be dismissed, because you are looking for research biased to your opinion, and failed to provide the particulars in the first study you quoted, making the quoted content appear to validate your opinion when it did not.

And... "20% report erections strong enough for intercourse at 5 years of follow up"... again ignoring variables in this study.

I have no interest in getting into an "I'm right and you're wrong" contest here. I acknowledge that one side effect is 100% of the time... penile shortening. I try to warn everyone who posts in this forum, and the urologists certainly do not inform patients of this side effect.

But for the sake of accuracy, they need the truth about the ED, and not wholesale condemnation of the RP procedure based on studies quoted out of context.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Another almost universal practice here at this forum when discussing the side-effects of RP is to never mention the side-effect of RT, as if they did not exist.

A major difference in RP vs RT for PCa is that in PR the side-effects occcur instantly, whereas with RT, they occur later, and gradually.   This undoubtedly makes data recovery of RT effects much less likely to be reported in statistical compilations.

max

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Instead of attacking my competency to do research and MK1965 emotional status as you and the other pro surgical individuals have done, please provide research that support that there is a low rate of ED resulting from surgical intervention. I'm sure that you, as an intelligent man, who is able to make these determininations about others,  will have the results of  your research readilly available to share that will indicate this.

You say, "But for the sake of accuracy, they need the truth about the ED", so, please correct the information that I provided  with the results of your research

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi All,

I thinks it's pretty common knowledge that if you get surgery either open or robotic you will have ED & leakage issues, usually within a 0-12 month recovery time they lessen, sometimes if the surgery goes bad you are left with permanent ED or leakage.

With radiation very few side effects during treatment with possible side effects later on(month to years) sometimes severe, sometimes not(damage from the radiation on un-intended targets).  People just need to be aware of the side effects and make your choice.  There is no wrong or right treament option, you need to pick one if you want the cancer gone and then realize that you could or will have some of these side effects.  Very simple guys, no magic here.  As people on this board that have gone through these treaments we should share our experiences and make sure people coming her for gudiance know the risks of any treament.  Again there is no right on wrong treament, surgery & radiation both have side effects.

My surgery was successful in removing my cancer(I hope,only time will tell) but I did walk away with a slight stress leakage issue which I am willing to live with as a consequence of my surgery.

Lets cut down on the personal attacks and help new people coming to this board gain from our experiences. A lot of these personal attacks accomplish nothing except making us look like immature adults.

 

Dave 3+4

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Very likely, less than 1% of the men in the US with PCa read this forum.  If you look at the number of "regulars" here, and then look at how many times each post is read by someone (without posting), then the number is WAAY less than 1%  To paraphrase Macbeth, we are all a  "sound and fury, signifying nothing."

I do view the forum as useful to those who partake of it; otherwise I would do what most men do, and forget that it exists.  But flawed, definitely flawed.

RP will continue to be the cure of choice for more than half of all new patients, because people have an instinctive, intuitive desire to have a malignancy "gone."  With improvements in RP recovery all the time, this will not change or decrease, regardless of what any man writes here.

RP is often called "barbaric" here.  How "barbaric" is it to radiate an organ until it becomes charcoal, and then leave it in the body ?  People fear cell phone wattage, and microwaves used to scare people to death.  But, some men see 86 Gray of radiation as "more natural" than surgery.  Very well.  We are all simply men trying to become well in the easiest and least destructive manner possible. Ultimately, I believe that every writer here wishes to share the truth and be helpful.  There are no perfect or risk-free ways to do this, however.

I read the other day about a famous English guitarist who had cancer a few years ago (you would know his name, but I will not state it here).  He was (successfully) treated with radiation, and adjuvant chemo was the protocol.  However, he refused the chemo, so as to not lose his hair.   I am not making this up.  And know that the hair loss would have been temporary.

I have never been an "anti-radiation" guy.  I very nearly had RT myself, and  know that it is usually a good choice, and many times, the only real clinical choice.  All that I object to and see has harmful are the claims made against surgery.  Valid numbers are often used, but taken out of any historic or clinical context.  My two cents, for now.

max

MK1965
Posts: 178
Joined: Jun 2016

max,

you just unintentionaly made point against surgery mentioning refusal of chemo by famous guitarist so as to not lose his hair.

How much more important is to be potent and have spontaneous erections when man needs it then have a full head of hair ( unles that is part of your image as for Prince, Valderama, Bert Raynolds etc.)

If coronary artery bypass grafts CABG would have such a low recovery rate, thoracic surgeons would be out of business.

MK

MK1965
Posts: 178
Joined: Jun 2016

Prostatectomy an ED - World journal of men’s health - Aug 2016; Capogrosso et all 

.....18 months after RP 60% of men reported an inability to get an erection, at 24 months it was 41.9%

( my underststing is with PDE 5 help, wondering about spontaneous, how low is that?)

MK

Clevelandguy
Posts: 462
Joined: Jun 2015

MK1965,

 Robotic nerve sparing techniques have a much better rate of success on ED.  Again that all depends on how involved the cancer was around the nerves.  I think this was from the same report that you sighted, August 2016:  "RARP(Robotic Assisted Radical Prostatectomies) series reported potency recovery rates of 32% to 68%, 50% to 86%, 54% to 90%, and 63% to 94% at 3, 6, 12, and 24 months after surgery, respectively .  Kinda of variable probably based on the amount of nerves vs involvement of the cancer in the study.  Just hope your on the high side of the stats..................

 

Dave 3+4

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Joined: May 2012

It is well worth noting that in any case in which a surgeon discovers cancer in or on the erectile nevers, and cuts them out, if that same person were treated with radiation (any form), then they, too, would require that the nerves be killed via radiation.

Otherwise, the cancer is left in the body and will begin raising PSA above nadir, at some future point.

But: perineural involvement, whether inside or outside the gland, is virtually never detectable tooday with virtually any scanning technique.  When it is detected, it is virtually always via biopsy. Roll your dice the way you best see fit.

Removing the erectile nerves is not always a careless case of excessive caution. Sometimes, it is the only way to save a man's life, which is the goal of any first-line PCa treatment.

max

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Clevelandguy, I like your comment about personal attacks. They are not productive, in fact it takes the focus away from the subject. Thank you for that.

If we might, I recommend that we list research finding along with any and all comments, otherwise we will have a place to vent, but not gain knowledge from this thread.

Best

Grinder
Posts: 441
Joined: Mar 2017

I find it disturbing that persons in this forum treat their 40-60 stats as a "Wheel of Fortune" where four slots are "permanent ED" and six slots are "ED recovery". 

With this mindset, a new patient goes into RP treatment believing he has a 40% chance of permanent ED. This is a ridiculous notion being created by taking research out of context and excluding variables that effect that research.

An informed patient will look at the variables that effected ANY outcome and try to minimize ANY risk, but you would have them only looking at the wheel of fortune as if it is simply a game of chance, or a crap shoot.

Here are three VARIABLES that are listed by WEBmd:

" The severity of the erectile dysfunction depends on the type of surgery, stage of cancer, and skill of the surgeon." 

It is further said that in NON-nerve sparing surgery the likelihood of recovery from ED is possible but extremely unlikely.

I cannot believe I am being castigated in this thread for demanding that VARIABLES be considered when assessing decisions for treatments. Would someone please explain to h&o that it is the variables that effect outcomes, and those variables must be considered to make an educated decision? Apparently I am not very good at explaining the self-evident.

Grinder
Posts: 441
Joined: Mar 2017

"Potency was defined as the ability to achieve erections adequate enough for penetration. Return of potency was significantly faster in the RALP group as 50% regained potency at a mean follow-up of 180 days after RALP compared with 440 days after RRP. Krambeck et al. compared 588 RRPs with 294 RALPs[14] using the same definition as Tewari. At 12 months postoperatively, 62.8% of the patients were potent in the RRP compared with 70.5% in the RALP group. Rocco et al.compared 120 patients who had RALP with 240 patients who had RRP. At 12 months postoperatively, they found that 73% of the RALP patients had regained potency, compared with only 48% of the RRP patients."

 Again, what is the difference between the 73% group that regained potency after only one year and 48% group that regained potency? 73% of the robot-assisted surgery group regained potency after one year, whereas other surgeries, open and laparoscopic, only 48% regainedi potency after only one year.

What was the difference? A VARIABLE.

Of several studies Medscape investigated, they concluded:

 "Across the boards, these studies have demonstrated that potency outcomes are better in robotic series than in open or laparoscopic series. "

 Why is that so difficult to understand, unless I am not very good at explaining this. Does anyone else think i am being the bad guy for trying to explain this?

MK1965
Posts: 178
Joined: Jun 2016

Grinder,

”50% regain potency at 6 months post RARP”

 

This is the JOKE OF THE DAY!

i had robotic RP and still 16+ months waiting for sign of life in my deeply comatose non existing penis.

 

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Joined: May 2012

Why is that "the joke of the day," MK ?

Your particulars are ancedotal, and therefore do not "disprove" any assertion regarding RP, one way or another.

max

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi Grinder,

Sad to say but no two operations are the same, different tumor size, different patient complications all provide for different outcomes.  I would assume thats why the range in recovery rates, but I would think most people would agree that Robotic assisted surgery in the correct hands will give you better results than open surgery.  I was told the robotic surgeons moves are actually slowed down during the operation to give the surgeon more dexterity and precision. It just goes to prove that there are no guarantees for any surgery, any type of procedure.  Lot of variables need to be understood with the patient before the surgery takes place.  Even in easy surgeries things can go wrong due to unforseen complications. 

 

Dave 3+4

lighterwood67's picture
lighterwood67
Posts: 209
Joined: Feb 2018

In my journey, I have been reading on this site and enjoy the factual side of RP vs RT.  I have spoke to both in my hometown.  I already posted what the RT person said.  The RP person told me that he had leakage on the way home after the catheter was removed.  He put another Depends on that night and in the morning no leakage.  He said he does have leakage if he strains while doing something physical.  He said he does get erections with the aid of cialis.  He was diagnosed 14 years ago at 56.  He is now 70.  He told me his PSA was 0.  Just based on reading on this site, there appears to be lots of approaches to treatment.  All appear to have side effects.  I do not claim to know nearly what some of you folks know on this site and I apprecaite your sharing information.  We share a common enemy.  There are a lot of human variables in these equations.  Some are attitude; physical shape; mindset; emotional support.  In most cases, hard to put a statistical value on the human side.  So you listen to the specialists and weigh what they say and move on.  I am in good spirits and at peace with my decision.  I am going to fly the RP plane 3/20/2018.  When I am done with this, I will post how I came out.  

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

My spouse is new to the treatment journey so I appreciate your sharing how you decided which road to take. Mostly I want to say good luck and may all go well on the 20th. Sending you a hug and prayers that the Divine guides your surgeon’s hands. 

lighterwood67's picture
lighterwood67
Posts: 209
Joined: Feb 2018

I was in the military for 26 years.  I was in combat communications.  In all of my journeys I have never been alone.  Through the good and the bad, the One won made me; the One who loves me has always been with me.  Thanks for the prayers.  Please pray for my family, they will have a long day on 3/20/2018.  Again, thanks.

Grinder
Posts: 441
Joined: Mar 2017

I have just found a newly updated site for evaluating surgeon records. This is one of the crucial "variables" that effect outcomes and make the difference between successful nerve sparing and unsuccessful. I am posting it starting a new thread.

Here are the three most crucial variables, though there are others that can affect outcomes. Any patient considering prostatectomy should weigh each of these variables carefully to make an informed decision and minimize risk.

" The severity of the erectile dysfunction depends on the type of surgery, stage of cancer, and skill of the surgeon." 

In my case, I had surgeons scorecard as a reference for the skill of the surgeon, and my GP  checked out local surgeons and their reputations and availability. 

The type of surgery was recommended by a friend who had nerve sparing  Davinci RP and was very confident in the local facilities. 

Thirdly, I was Gleason 6 3+3, so getting surgery done early would also reduce my risk of permanent side effects.

Finally, my wife (a marvelous, wonderful lady) and many family and friends were praying for me. Life was pretty crappy before the RP, but i always felt heading into the RP, that i was being bouyed up with confidence. And even the side effects would have been better than alternating between daily Flomax, and foley catheters inserted when the Flomax couldn't cut it, meaning a trip to the emergency room to have a foley installed. I could not travel anywhere for fear of a shut down episode where i could go 16 or more hours without urinating... anybody who thinks that is no big deal should try it sometime.

Of course, one variable  that is also affected by the others is the damage, stretching, and trauma suffered by the nerve bundles that transmit neural impulses back and forth from the brain to the prostate area. 

There are other variables that probably should be considered, These first three are the ones Medscape mentions that effects outcomes in all of the studies they reviewed.

If you are a patient considering RP, be sure to minimize your risk, and in case your surgeon neglects to tell you, expect to lose 1-2 inches from the retraction to reattach the urethra, 6-8 months on average for incontinence recovery, and 1 to 2 years on average for ED recovery. For some, the recovery time is much shorter, for some they can be permanent. You want to maximize your recovery chances and reduce your risk.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

 

For side effect of radiation alone, I googled SBRT, a radiation treatment that some of us ask patients ot consider.

6. Side Effects of SBRT. No patient has experienced complete urinary obstruction or urinary incontinence, and there were no severe (grade 4) complications. Mild (grade 2) urinary and rectal side effects were rare, 5% and 2%, respectively.

Here are various studies about SBRT for your consideration

https://www.google.com/search?authuser=0&source=hp&ei=uumtWsuZHIWM0gKhkJOwDg&q=sbrt+prostate+cancer+side+effects&oq=sbrt+prostate+cancer+side+effects&gs_l=psy-ab.3...1939.15211.0.16290.34.33.0.0.0.0.156.3336.13j19.32.0....0...1.1.64.psy-ab..2.31.3217.0..0j35i39k1j0i131k1j0i67k1j0i131i67k1j0i22i30k1j0i22i10i30k1j33i21k1j33i160k1.0.72PU5GuP0Tc

 

 

 

...........................................................................................

Here I googled , "prostate cancer side effects surgery versus radiation therapy"

Radiation and surgery are treatments that destroy or remove localized prostate cancer. Both treatments also have long-term side effects, like bladder, bowel, and erection problems. In the first 2 to 5 years after treatment, the chance of having erection or bladder problems is higher with surgery.

 

Here are various comments and studies for viewing

https://www.google.com/search?authuser=0&ei=y-mtWqL3EYeL0wKI1JjwCw&q=prostate+cancer+side+effects+surgery+versus+radiation+therapy&oq=prostate+cancer+side+effects+surgery+versus+radi&gs_l=psy-ab.1.0.33i22i29i30k1l4.9781.36150.0.40065.62.55.7.0.0.0.133.5949.14j41.55.0....0...1.1.64.psy-ab..0.60.5781...0j35i39k1j0i67k1j0i131k1j0i20i263k1j0i10k1j0i131i67k1j0i22i10i30k1j0i22i30k1j0i13k1j33i160k1j33i21k1.0.EHUk2bI5T4w

 

lighterwood67's picture
lighterwood67
Posts: 209
Joined: Feb 2018

Exactly, a lot of variables.  Never understimate the human one.  Smile, I am.

Grinder
Posts: 441
Joined: Mar 2017

Btw... I apologize to H&O and MK if my comments sounded like a personal attack. But my position on the matter remains, it is just that I did not express it in a diplomatic way. If I were Secretary of State, we would probably be at war with every nation on earth. ;)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Grinder, 

Or fired, by the Trumpster !

 

max ;)

Grinder
Posts: 441
Joined: Mar 2017

...fired by Trump... LOL :D

good one.

Grinder
Posts: 441
Joined: Mar 2017

This is from the American Cancer Society's own website:

Bowel problems: Radiation can irritate the rectum and cause a condition called radiation proctitis. This can lead to diarrhea, sometimes with blood in the stool, and rectal leakage. Most of these problems go away over time, but in rare cases normal bowel function does not return. To help lessen bowel problems, you may be told to follow a special diet during radiation therapy to help limit bowel movement during treatment. Sometimes a balloon-like device is put in the rectum during each treatment to keep the bowel as still as possible while treatment is given.

Urinary problems: Radiation can irritate the bladder and lead to a condition called radiation cystitis. You might need to urinate more often, have a burning sensation while you urinate, and/or find blood in your urine. Urinary problems usually improve over time, but in some men they never go away.

Some men develop urinary incontinence after treatment, which means they can’t control their urine or have leakage or dribbling. As described in the surgery section, there are different levels and types of incontinence. Overall, this side effect occurs less often than after surgery. The risk is low at first, but it goes up each year for several years after treatment.

Rarely, the tube that carries urine from the bladder out of the body (the urethra) may become very narrow or even close off, which is known as a urethral stricture. This might require further treatment to open it up again.

Erection problems, including impotence: After a few years, the impotence rate after radiation is about the same as that after surgery. Problems with erections usually do not occur right after radiation therapy but slowly develop over time. This is different from surgery, where impotence occurs immediately and may get better over time.

https://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html

Of course, referencing "surgery" likely encompasses ALL types under the umbrella term "radical prostatectomy" and does not take  into account the other variables I keep bringing up to no avail.

Grinder
Posts: 441
Joined: Mar 2017

I had 41 treatments of hi dose radiation 5 years ago. I developed chronic radiation proctitis and other gi tract problems ( Chrones type ). I also have chronic burn of the urinary tract. The symtoms have gotten worse. 

************

I am using the 25 mg supposititories for about 3 months following radiation procities diagnosis about 1.5 years after prostate seeding.  I seem to be in a holding pattern.  My doctor wants me to be let time work before going to the next step.  I think his chosen route for me is to try a Formalin treatment is time and supposititories don't work.  My problem is located in the rectum area.

********************

Hi, my Dad got radiation proctitis associated with severe pain and some bleedings. Do You know any treatment to improve his rectum and colon shape, tks

*************

I have after also gotten cronic radiation proctitis  I have no bleeding but I have to get up several times a night because of loose bowel movements  I had 45 radiation treatments and hormone treatments    My gastrologist wanted me to go on canasa but with my insurance it would cost 447 dollars a month   According to him this is the best treatment although it doesnt sound like there is a cure   

**************

Hi--I was having the same problems as you but I was also having extreme pain with the bowel movements--It's been almost a year since the radiation and it has gotten better-except for flare ups every now and then--I also used proctosol--Here in Canada you can get a generic version of it called "Proctol"--it has the same ingredients and costs a lot less

*******************

My husband had hormone treatment, followed by external beam radiation, followed by seeding. The seeding was done a year ago. He is now suffering intense pain from radiation proctitis. Would like to hear from anyone else who has had this problem. Thank you.

 **************

Grinder
Posts: 441
Joined: Mar 2017

"I've been wondering, how can one measure the outcomes of prostate surgeons. It seems to me that selection is based mostly on reputation, length of time doing, operation quantities, and quality of hospital association. How does one really know? As a medical professional, can you provide some insight?"

This person has the right idea... He wants to investigate the variables, in this case the outcomes of different surgeons, quality of hospital association, etc.

Who do you suppose wrote this inquisitive and insightful post in April 2009, congratulating a patient for a successful surgery outcome?!

Who could it have been?!

Grinder
Posts: 441
Joined: Mar 2017

I was severely burnt with radiation. It also hit my colon has cut scan and colon is all inflammed. The stretching and pulllin on inside is horrible. Nothing can be done but time will heal.  Has anyone else had this?

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Posts: 6
Joined: Jun 2012

Hi. I feel the need to warn people about IMRT radiation treatment. My husband had this done with Calypso technology. He had 45 doses of radiation. He is also Stage 1 so his treatments were not agressive. About halfway through, he started experiencing a lot of pain when he had to go the bathroom. It burns to pee and hurts really bad to have a bowel movement because your insides becomes raw from the radiation. He finished his last treatment 2 months ago. The first month after treatment was a 9 or 10 on most days for his pain levels when he had to use the bathroom and he had cramping during the day. This morning (2 months later), I heard him screaming and then crying on the bathroom floor. My husband is only 60 and he is strong man. I've never seen him cry like this and it is heart-breaking. The doctors totally minimized the pain factor when they originally talked us into doing IMRT (which is more expensive) instead of Brachytherapy. We now wish we went with Brachy. If you have not chosen your treatment yet, please consider this carefully. I'm also scared to think how much longer this will be until his pain goes away and he can resume a normal life. 

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Grinder
Posts: 441
Joined: Mar 2017

http://www.med.umich.edu/urology/events/Other/PCNews.pdf

The chapter you want is on Quality of Life- that starts on page 6 of the document.

Strong evidence supporting surgery for overall Quality of life after treatment.

From page 6:

"It was found that each of the three common primary prostate cancer treatments (prostatectomy, brachytherapy, or external-beam radiotherapy) were associated with distinct patterns of change in quality-of-life domains related to urinary symptoms, sexual and bowel function, and vitality or hormonal function. These changes in quality of life were found to be significantly associated with the degree of outcome satisfaction among patients and their spouses or partners.
"Patients in the brachytherapy group reported having long-lasting urinary irritation, bowel and sexual symptoms, and transient problems with vitality or hormonal function. For all groups, urinary incontinence was at its worst by 2 months after surgery and then improved in most patients. Eighteen percent of patients in the brachytherapy group, 11% of those in the radiotherapy group, and 7% of those in the prostatectomy group reported having moderate or worse distress from overall urinary symptoms at 1 year. After prostatectomy, mean scores on urinary irritation and obstruction improved, particularly in patients with large prostates.
"Brachytherapy and radiotherapy were both associated with a reduced quality of life related to bowel function early after treatment, and the change lasted for a year or more. In contrast, no substantive change in bowel symptoms was detected after prostatectomy."

Grinder
Posts: 441
Joined: Mar 2017

Are you getting tired of anecdotal evidence yet? How do you think these people felt? 

 

"Don't feel that you are alone.  I too am 60 years old, I go to the gym 5 days a week, which includes a daily 4 mile run.  I'm also a retired engineer who just had to drop out of my 42 session IMRT because of severe radiation sickness.  I lasted exactly 5 weeks (or 25 sessions).  I can no longer run or walk normally.  I have a severe limp and can not climb or decend stairs without assistance.  What was my Ocnologists answer to this?  It shouldn't happen, but it did.  So now I'm in personal rehab trying to get my hips and pelvis to work again.

I wouldn't recommend any form of radiation to anyone, if there is a surgical alternative.  IMRT is based on technology first developed in the 1930's and the first medical implementations showed up in the 1950's.  It's essentially 50 years out-of-date, and now we get accelerated Proton radiation, generated by a 3 story tall LINAC???"

Grinder
Posts: 441
Joined: Mar 2017

"Just had one of the worse bowel movements of my life. Felt like something ripped inside me. Blood was fairly flowing. Looked up on web and they were saying that about three years after radiation you get a ripped anus. Why don't they tell you about this? I am taking percocet for this one as it really hurts. Looked up on web and they said after three years, if you went through radiation good chance that you would experience painful. Bowel movements and bleeding.
I think this is really bad. It has just come up and now I have lost all energy. Has anyone else experienced tnis? "

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"My husband had cyber knife treatment last September 2011, with only mild side effects a week later. Now, more than 6 months later, he is having severe problems. For the last two weeks he has had pain , burning, urgency, and blood in the urine. He was prescribed an antibiotic and flomax for a week, which did not relieve his symptoms. Yesterday we back to the doctor. He did a cistscope to check his bladder, a sonogram, and urine test. He said that husband does not have an infection, and took him off of the other meds, and put him on vesicare. He said that symptoms are a result of the cyber knife surgery last September. He still has all of the symptoms, and cannot sleep because of the pain and having to constantly go to bathroom. Has anyone else had this, or have any advise ? Please let us know, as he is miserable. Thanks

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I am going to quit now. I figure, rather than talk myself, I would let other people speak about their own experience... I hope this is enough to prove my point about variables in ALL treatments.

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi Grinder,

Could it be Hemorrhoids?  Sometimes when I have a large bowel movement my hemorrhoids bleed, feels like I'm giving birth to a Zucchini!

Dave 3+4

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

...rained on my parade! I’d have said “pissed on my parade” but that’s hardly ladylike. BTW, I’m mostly joking. Kinda.

My spouse and I had a consult with radiation oncologist today. The news was a relief that the combined ADT and EBRT are curative in his case. This is after 2+ months of assuming he has bone mets and/or has treatment options limited by comorbidities. The RO was very reassuring about the outcome of 8 weeks of radiation to start after 60 days of ADT. I asked about side effects, both during radiation and long term. Stricture? Only with brachytherapy which he won’t be getting. Both urinary and bowel issues? Peak in early EBRT but are improved after about two weeks. Long term issues with both at less than 1% in his experience. He said the last time he observed chronic bowel issues was during his residency in 1992. Talked about hydrogel to protect rectum as patient’s choice but odds are patient won’t need it.

Hmm... Was he overselling his work? I had promised my brain a break from cancer for a bit so it’s my own fault that I’m reading your anecdotal evidence at 1 in the darn morning. I will revisit the topic though and that’s a good thing. Thanks. I think. ;) <— a wink.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

fullmoon,

Not wishing to be a killjoy, but your doctor either misspoke or you misheard.  No doctor, ever, can say with certitude that a treatment will be curative in a given particular instance.  What he no doubt meant was that ADT and EBRT are potentially curative in a case with his particulars.  He might reasonably then add that it is likely curative.

By definition and in actuality, only two things are ever curative of PCa:  these are radiation and surgery. And they are themselves only curative under certain circumstances -- Staging, degree of metastasis, and some others.   HT can assist either of these two in cure, but is not by itself a curative modality.

max

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hi, Max. No, he (radiation oncologist) didn’t make any guarantees at all . I did hear him say that it is possibly/likely to be curative. The excitement was that there’s hope; contrasted with what we had been told several months ago. A urologist had told us that since he has high risk, aggressive PCa, the only thing available would be ADT and that it might fail as soon as in 2 years. The urologist further said that radiation might be used only for when ADT failed and bone mets became painful.

We have since switched to a NCI endorsed cancer center where he had additional scans, including a Tesla3 MRI. Based on all the tests and scans since December, the MO and RO concur that combined ADT and EBRT are potentially curative in my husband’s case. Thank you for making sure I understand. I’ve learned a lot from everyone who posts here. Mary

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Thanks for letting us know that the doc did the right thing, and qualified his assertions.

I understand exactly where your feelings and relief are coming from.  You might not be a classic rock fan, but Pink Floyd, in their hit Hey You has a line "Don't tell me there's no hope at all; united we stand, divided we fall...."

My first cancer was much worse than my second (PCa).  A surgeon and family practicioner told me, based on CT, that I was "totally engulfed" in Lymphoma (neck to pelvic region/groin; spleen covered.  Lungs covered, escophagus compressed with nodes, as was my heart cavity). 

My wife and I went to our first meeting with a medical oncologist pretty terrified. What I most wanted was a fighting chance, some reasonable cause for hope. It turned out the strain of Lymphoma was very treable with a chemo cocktail. Unlike PCa, chemo is curative of Lymphoma and Leukemia; usually, it is the only tool available for these blood cancers.

Your husband is blessed with a fighting chance, a cause for hope, a sense that you can do something.

St Paul says "we hope against hope."  Words to live by.  I know you will continue to share his fight regularly,

max

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Pink Floyd and St. Paul - love both messages! Thank you.

Grinder
Posts: 441
Joined: Mar 2017

FM50... please don't misunderstand my intention here. I dont want to scare anyone away from radiation... I cited these cases to show that it is essential to consider all variables when assessing treatments...

The most typical variable is the expertise and experience of those administering the procedure. 

One thing we can learn from all these bad experiences, and others... assess all the risks and do what you can to minimize them.

Most of this anecdotal evidence is from 2013... so procedures have improved since that time I would expect.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

It’s all ok,G. I do understand your motivation and it will spur me to research outcomes and side effects. We were just both so excited to hear the good C (curative) word yesterday that reading anecdotes was a tiny buzz kill. I am realistic though so acknowledging there can be serious side effects and trying to counter/avoid them is very important. Plus I was sort of yanking your chain and trying to be slyly humorous. That being said, I was surprised the RO said that placing the hydrogel to guard the rectum is a hard sell with his patients. It’s relatively cheap, covered by Medicare, and effective. So the resistance puzzles me. My spouse is pretty sure he’ll have the gel inserted. Has anyone here had that treatment before radiation?  Thanks for all your shares.

Grinder
Posts: 441
Joined: Mar 2017

From what I understand, the hydrogel can displace the rectum to keep it away from the radiation target, and protects the rectum from burning in case there is an incident where the radiation misses the target for whatever reason. Even though mistargeting may be rare, it is wise to take every precaution necessary to reduce risk to an absolute minimum. I can only imagine that other patients have over-confidence in treatment that they do not want to tolerate the discomfort of the hydrogel. But the consequences of radiation burn proctitis is too severe, even in rarity, so you are being very wise to take every precaution necessary to reduce your risk. 

Your spouse is extraordinarily fortunate and blessed to have you in his life... 

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