CPGeek replied to my first post by pointing out that penile length was reduced due to removal of a segment of urethra with RP. I wanted to get more feedback on the issue. My reply to him:
“Thanks for your post. I suspected as much after reading descriptions of the procedure.
I’m a little dismayed by the lack of explicit reference to removal and resectioning of a portion of the urethra as the direct cause of loss of penile length in the medical literature. It’s as if there is no consensus as to whether this is the actual cause or there is enough variation in outcomes to ascribe the cause to other factors.
In any event, the prospect is particularly horrifying for men with extremely enlarged prostates. Presumably, a larger prostate means a larger section of urethra that must be removed and a larger span to resection - thus a larger reduction in penis length?
At 81 grams, and 5.7 cm in diameter, my prostate size and attendant urinary symptoms make radiation therapy, including brachytherapy, inadvisable, according to MSK:
“Those patients with very large prostates or those who have a significant amount of urinary symptoms may experience more side effects with brachytherapy. In these situations, we often steer such patients toward other kinds of treatment such as surgery or external beam radiotherapy. Surgery to remove a large prostate may be the better approach, to avoid the urinary symptoms that could be associated with radiation treatments.” (mskcc.org/news/what-every-m...)
This jibes with what my oncologist at UCLA is telling me: basically, that radiation should not be used in men with intermediately aggressive cancer in their 50s, as their chances of complications or recurrence with an irradiated prostate are too high and too limited in terms of further treatment options. He stresses that radiation can always be used as a follow up to surgery; however, the converse is not true. (mayoclinic.org/diseases-con...)
I know that long-term outcomes from SBRT look good, but as this technology is relatively new, we don’t know how they will fare beyond 8-10 years. The long term morbidity data in general for young men receiving radiation as opposed to surgery don’t seem to be very good.*
*renalandurologynews.com/hom...
*webmd.com/prostate-cancer/n...
So much about outcomes from RP is reliant upon the skill of the surgeon. I wonder, is the degree of penile shortening also so dependent?
Thanks to everybody for your honesty and generosity.
(1) Actually, the reduction in penile length has nothing to do with shortening of the urethra. If you take time to study the pelvic anatomy, you will learn that the penis is not pulled up, the bladder moves down (by gravity). The loss of length (and girth!) is caused by tissue atrophy due to lack of nerve innervation. You may be interested in Mulhall's explanation:
(2) The prostate size limit is only for low dose rate brachytherapy, and does not apply to high dose rate brachytherapy, SBRT, or IMRT (up to at least 100 cc). The reason for the restriction with seeds is that too many seeds would be required for large prostates. The urethral dose and dose to organs at risk would be too high. Sometimes, they shrink large prostates with neoadjuvant ADT before inserting seeds. This is not a constraint for other kinds of radiation.
(3) "radiation should not be used in men with intermediately aggressive cancer in their 50s, as their chances of complications or recurrence with an irradiated prostate are too high..."
There was a randomized clinical trial of men with localized PC who were randomly assigned to surgery, radiation, or active monitoring. Complications with surgery were the worst, and cure rates were no different.
The real oncological advantage of radiationemerges for those with unfavorable risk PC. As you can see in the link below, for "unfavorable intermediate risk" patients treated with surgery, the long-term progression-free survival is only 53% vs 92% for brachy boost therapy.
... and too limited in terms of further treatment options. He stresses that radiation can always be used as a follow up to surgery; however, the converse is not true. (mayoclinic.org/diseases-con...)"
A "truthy" statement. The truth is that there are more salvage options after failed radiotherapy and the salvage options have fewer side effects (see the table at the end of the following article):
(4) "I know that long-term outcomes from SBRT look good, but as this technology is relatively new, we don’t know how they will fare beyond 8-10 years. "
Remember that robotic prostatectomy was first used in 2000 and SBRT was first used in 2003, so if you would argue that data doesn't run long enough, that would certainly be true for both. Ideally, we would want 20+ years of follow-up on any therapy, but that is impractical and the results would be irrelevant by then anyway. See:
1. Relieved to know there are other causes of shrinkage. Perhaps these can be addressed in rehab? (As it doesn't seem likely that the urethra can be lengthened again after having a section removed.) Intuitively, it seems the bladder should be able to move down with gravity's help as you say. I'll check out the study you cite.
2. The article from MSK did not parse by procedure, but made broad statements about the advantages of one type of therapy over another. (mskcc.org/news/what-every-m.... This article is also in keeping with the information in the Prostate Cancer Foundation's Patient Guide. (pcf.org/guide/)
I've heard of use of ADT to shrink large prostates, but haven't heard of it used as a first intervention for extremely enlarged prostates with localized intermediately aggressive tumors, though. Will research further.
I'll also have to do more research generally into high dose rate brachytherapy, SBRT, or IMRT (up to at least 100 cc) on extremely enlarged prostates (above 80 g).
3. a) "Two cohorts included 1643 men who agreed to be randomised and 997 who declined randomisation and chose treatment." (europeanurology.com/article...
- Wasn't a completely randomized trial.
- Most valuable information was derived by combining the two cohorts:
"there were higher risks of sexual dysfunction (95% at 6 mo) and urinary incontinence (55% at 6 mo) after surgery, and of sexual dysfunction (88% at 6 mo) and bowel dysfunction (5% at 6 mo) after radiotherapy."
Seems complications were "the worst" for surgery if you rate an even chance of urinary incontinence as far worse than a 5% chance of bowel dysfunction. I, for one, might choose the former over the latter, considering that sexual dysfunction rates were comparable (95% to 88%).
b) As for the "real oncological advantage of radiation... for those with unfavorable risk PC" the study you summarize in your blog states impressive SBRT results for this population (redjournal.org/article/S036...
"By Kaplan-Meier analysis, ... freedom from BCR (FFBCR)...5- and 8-year rates (as no 10-year follow-up was available) in the unfavorable intermediate-risk group were and 93% and 85%."
"Corresponding ... overall survival ...5- and 8-year rates were and 90.5% and 88.4% in the unfavorable-intermediate risk group."
Both of these results indicate a worrisome increase, however, in recurrence and morbidity as the years advance. If we extrapolate 10, 15, 20 years out, the outlook appears rather bleak for both.
What I don't understand is where you derived your comparative analysis with surgery patients, as this study only sought to determine the long-term effectiveness of SBRT radiation on low and intermediate risk PC patients.
c) "Does my choice of initial prostate cancer treatment preclude other treatments later on?"
- Answer From Patricio C. Gargollo, M.D.: "For most initial prostate cancer treatments, the answer is no. For instance, if your initial treatment is surgery to remove the prostate (prostatectomy), other treatments, such as radiation therapy and hormone therapy, may be options for you later, if necessary.
However, if you choose radiation therapy or cold therapy (cryosurgery) as an initial treatment, surgery may not be an option later because of the risk of complications."
4. Surgical treatment for prostate cancer and radiation therapy have histories that pre-date both robotic surgery and SBRT innovations. Whereas one can grant that SBRT is a game-changing advance with real ramifications for long-term survival, I don't think that robotic surgery will have the same morbidity improvement over previous surgical iterations, as much as it affects quality of life issues. (I could be totally wrong, of course.)
It is also true that there is a significant lag between the time a procedure is first performed and the time when it becomes widely used, or, even the standard of care.
I believe that longer-term data comparisons are still valid for making treatment decisions, especially if one expects to live for decades.
I note the following from a Canadian study published in the journal European Urology:
"The most common treatments for localized prostate cancer are surgery and radiation therapy.
But which works best to keep the disease at bay?
To find out, Nam's team looked over data from 19 studies that included a total of nearly 119,000 men with localized prostate cancer.
Findings from 15 of the studies showed that those who received radiation therapy were twice as likely to die from prostate cancer as those who had surgery.
Findings from 10 of the studies also showed that men who had radiation therapy were 50 percent more likely to die sooner of any cause, compared to those who had surgery."
I also note the following from researchers at the University of Maryland at Baltimore:
"Men younger than 60 years with high-risk prostate cancer (PCa) have better overall survival when their initial treatment is radical prostatectomy (RP) rather than radiation (RT), according to researchers at the 2017 American Society of Clinical Oncology (ASCO) annual meeting."
Of course, there are innovations in RT that offer improved outcomes and quality of life. I know I owe it to myself to research them thoroughly and talk to as many specialists as possible.
1. Did you read the link by Mulhall? He explains that urethral shortening is not at all a cause of shrinkage.
2. MSK does not have a size limit (other than >100cc) for other types of radiation, only LDR brachy.
3. a. That article shows the side effects broken down by the therapy they actually got. They also reported by which therapy they were randomized to (which is good research practice, but not as useful for patients). No important changes in results. Here it is:
• Sorry, I have no idea what you mean. Why would you combine the cohorts? The numbers based on what they actually received are what I showed you in that article.
• Those are not from a comparative trial. I show the sources for all those numbers - just click on the link. You can't "extrapolate" - the numbers often plateau, as discussed in my article about long-term trials.
• Yes, your doctor is certainly being truthy. What he is saying is technically true - salvage surgery is a terrible idea after salvage radiation. But he didn't really answer your question, did he?
4. Read the section where I wrote about "building a better mousetrap." I would argue that the really big innovation in radiation came with dose escallation, which first began in the late 1990s. Dose escallation changed RT from a second best alternative into an equal alternative. SBRT is just a technology for delivering a much higher biologically effective dose. The hypofractionation question was resolved in 1996 with the surprising success of HDR brachytherapy as a monotherapy. SBRT only built on that success.
You fell into a common trap. The studies you cite included radiation in older men (10 years older with radiation than surgery in most studies) and include radiation doses now considered to be non-curative. In fact, radiation only used to be given to men too old or infirm to merit surgery. Giving them a few extra years with radiation was the goal, not curing them. This is called "selection bias." That's why one has to look at a randomized trial (i.e., ProtecT) instead of retrospective studies like the ones you cited.
With regard to your response to 3b, I didn’t combine cohorts; the study authors did. My point was it wasn’t purely a randomized study. From the abstract: “Analysis was based on comparisons between groups defined by treatment received for both randomised and treatment choice cohorts in turn, with pooled estimates of intervention effect obtained using meta-analysis.” It states also that with regard to higher comparative PCa death rates for patients who received Active Monitoring, “stronger evidence was found in the exploratory analyses (randomised plus choice cohort) when AM was compared with the combined radical treatment group.”
Your point about the error in extrapolating from numbers reported over time when they often plateau is well-taken. However, the trend doesn’t look good.
Finally, if I fell into a common trap, it’s one that professional medical researchers from vaunted institutions led me into.
I appreciate your point about selection bias. It isn’t always possible to consider only randomized studies, though.
Fortunately, we do have RCTs on the subjects you raised.
I agree that not every doctor is the fount of good information we would like them to be. I've met a LOT of doctors in this field. In general, I would say that every doctor is a defender of his own specialty (or else why would he be a practitioner of it?). That leaves the work of becoming knowledgable to us patients. It's a formidable task. I took 7 months and met with 6 doctors before making my treatment decision, and I was starting with a base of knowledge (of science, research methods, and statistics) unavailable to most patients.
Mulhall's final line is "Finally, whether the institution of a pharmacological penile rehabilitation programme early after RP can abrogate these alterations presently remains unanswered." The article is from 2005; is the question still unanswered? My impression from past posts and info was a rehab program starting ASAP would help, but maybe that was just fro erectile function? But I'm just talking about my impression, not real knowledge....
It is extremely difficult to research shrinkage. The best measure seems to be "perceived shrinkage" -- if it seems smaller to you, that is what is really important. Some think that pulled length is a more objective measure, but pulling it doesn't seem to be a good measure of erectile length in men after RP, and what about girth? Many urologists don't even believe this effect exists - "what is not measured, does not exist" (The McNamara Effect). So there is no really good data. There are only case reports from from doctors like John Mulhall at MSK or Irwin Goldstein in SD who focus on the issue.
Mulhall (at MSK) did report the erectile function can continue to improve up to 3 years post-RP with continued penile rehab.
Normally I don't go around pulling my penis or even measuring it, and I assume many other men don't either, so I understand the difficulty! I did find that my erectile ability improved a bit even after three years.
I had SBRT and was told that any of the available treatments would have equal chances for success in my case.
Everyone has to find what resonates with them and it is a difficult decision.
I am happy that a year and a half out everything still works and my PSA is still going down. Takes awhile to stabilize but the docs are happy with the results so far.
Hopefully you will find satisfaction also in your treatment.
In my experience penile shortening is also caused by ADT. I can truly say I _used_ to be circumcised. Presented in 2014 with Stage 4, mets in the bones and put on ADT. It wasn't long before I was startled to realize that I had to skin back my new foreskin to keep from peeing all over the toilet. Still learning how to deal with a minute penis hidden inside folds of skin.
How much shrinkage? Couldn't really say -- I'm long past the age of measuring things! LOL But I would guess I've lost at least half my former flaccid length. I think that I have the opposite problem of now having excess urethra, causing urination problems. Will know more about that after I move and find a new urologist.
I can relate in that I’m also circumcised, but, depending on my mood and temperature, my guy cloaks himself in a mock turtleneck. Have had many errant urine streams by forgetting to pull back his hoodie at those times. I would recommend sitting to pee, which is something I do now frequently, but it doesn’t always go so well either, as I tend to shoot straight over the front of the bowl.
I’ve always wanted a real foreskin. Sounds like I might get my wish as surgery looks increasingly likely. Accentuate the positive.
I’m glad you’re still around to share your experience. Thanks for your post.
I am not sure I read every single line in this thread but here is my contribution which might be redundant.
I had Brachy and IMRT for a Gleason 9 PC. It seemed that this was the best choice at the time. My prostate was too large for Brachy for the reasons mentioned. I had ADT for maybe six months until my prostate was small enough. The ADT did the necessary reduction.
However I have had side effects and the cancer seems to have recurred so maybe this was not the best choice but it seemed so at the time and maybe it still was. I do not believe I was a candidate for surgery.
No point in second guessing. You made the best decision for you at the time. Concentrate on your best option going forward.
Had radiation and ADT. Penis atrophy cuz of ADT. Testicles shrank. Penis pump helped maintain ability to get hard. But, ADT kills sex drive so an effort to do my "exercises. "
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