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Local PCa Side Effects ~ Watchful Waiting has 'em too...

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Posted 3/30/2009 5:47 AM (GMT 0)

More from the PPML.  This information has various degrees that are not outlined.  The study duration is 10 years.  This shows the SE's may happen anyway if you just watch and wait...Surgery wins the most SE's award, but no one get's off easy...   This is found in PubMed. 

 

Here's the study...

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=18252677

 

Here's the skinny...

 

Sept 2007, Systematic Review: Comparative Effectiveness and Harms of Treatments for Clinically Localized Prostate Cancer Timothy J. Wilt, MD, MPH; Roderick MacDonald, MS; Indulis Rutks, BA; Tatyana A. Shamliyan, MD, MS; Brent C. Taylor, PhD; and Robert L. Kane, MD

PMID: 18252677

 

It said Adverse event definitions and severity varied widely. 

 

Total Erectile Dysfunction:

Watchful Waiting: 32.5% (so even those who have no treatment are at risk)

ADT: 85.8%

EBRT: 42.7%

RP: 58.4%

 

Urinary Leakage (Daily)

Watchful Waiting: 7.0%

ADT: 10.8%

EBRT: 11.8%

RP: 34.8%

 

Bowel movement issues was less with surgery than all other options but it was a small percentage for all modalities...

 

No guarantees anywhere...Age 65 and older were excluded for the study.

 

Tony

 

Posted 3/30/2009 1:45 PM (GMT 0)
I believe they took that into consideration. Meaning that if you do nothing to a cancer growing inside, it can and will cause symptoms including ED. And it stands to reason as well. Once a cancer expands around the nerve bundle, what other result would you expect? This is why 65 and older was eliminated.

Tony
Posted 3/30/2009 4:12 PM (GMT 0)
I went looking deeper into this because of Selmer's point. ED may in fact be a psychological piece as much as physical. Either way, if the patient did not have it before treatment, but in ten years had it with no treatment, it still registers as a valid point. Saying it's just "old age" is not a valid argument. There is always a cause. The fact is that most men to the age of 65 and even 75 have healthy sex lives. Even if ED was a natural part of aging, then it certainly can indicate those treated with other modalities were headed that way anyway. After 65 at Dx was excluded.

For me I choose to believe that this study is very interesting, and that it sheds light upon the fact that watchful waiting is an option, but not without side effects. As I posted in another thread, here is what the Prostate Cancer Foundation says about symptoms of prostate cancer:

If the cancer is caught at its earliest stages, most men will not experience any symptoms. Some men, however, will experience symptoms that might indicate the presence of prostate cancer, including:

A need to urinate frequently, especially at night;
Difficulty starting urination or holding back urine;
Weak or interrupted flow of urine;
Painful or burning urination;
Difficulty in having an erection;
Painful ejaculation;
Blood in urine or semen; or
Frequent pain or stiffness in the lower back, hips, or upper thighs.



When one reads this, it makes perfect sense that no treatment will lead to more pronounced symptoms of the disease ~ IMHO

Tony
Posted 3/30/2009 4:49 PM (GMT 0)
I sincerely doubt that most men between 65 - 75 have "healthy " sex lives. They sure aren't like they were at 19. What exactly is a healthy sex life for a 70 year old in your opinion Tony? You're really reaching on this one. Why was viagara invented. Just for radical sugery PSA patients?

Why not just state that this site is against watchful waiting no matter what study come out or what ever else is said supporting it and be done with it already.
Posted 3/30/2009 4:58 PM (GMT 0)
Fair enough and valid point,
But if we are talking about what we lose in treatments, then we have to compare it to what we might lose naturally instead of what we started out with when we were diagnosed. However, you will find a lot of guys arguing this point. No, we are not 21 when we are 65, but consider my opinion of healthy to be graded on the right curve as well...Still 1 in 3 men with total ED is still above the norm I am sure.


Tony
Posted 3/30/2009 5:07 PM (GMT 0)
Other than a small minority for most with PCa the bigger concern is incontinence not ED. But if you want to compare what we lose naturally compared to what is loss by lets say radical surgery you have completely omitted ejaculation. I believe that's worth mentioning. I for one can't even imagine an orgasm without doing so. I know that some claim yes it's less messy, or now they can fake it too. I'm happy I can still create a mess and that wet spot for her to sleep on. LOL not always ladies.. just had to say it...
Posted 3/30/2009 5:11 PM (GMT 0)
Viagra was invented for many reasons. Those on blood pressure meds and the like, those with other prostate conditions like BPH and prostatitis, those with other ailments, those with unhealthy habits. There are meny reasons it was invented. ED is not just a natural occurance. Just in the way no one dies of old age, there is always a cause.

Tony
Posted 3/30/2009 5:22 PM (GMT 0)

TC-LasVegas said...
Viagra was invented for many reasons. Those on blood pressure meds and the like, those with other prostate conditions like BPH and prostatitis, those with other ailments, those with unhealthy habits. There are meny reasons it was invented. ED is not just a natural occurance. Just in the way no one dies of old age, there is always a cause.

Tony

Who are you kidding viagara was invented for huge profits. Those resulting from the fact as men age they just can't get it up as well or at all compared to their younger selves. In philisophical terms we are not meant to reproduce when we get tool old. I say loss of libido and erection is a natural part of aging. There should never be any 90 year old fathers in nature. Do you also think menopause isn't a natural occurence? Yes no one dies of old age. It's just sometimes organs wear out in time? Is that it? Or if we could just lick a few of these pesky diseases and stop our immune system degrading man would be immortal??

Now I'm off to lunch so I'm done for the time being. As I said you're really reaching on this one Tony..
Posted 3/30/2009 5:23 PM (GMT 0)
Ziggy,
Your points are all valid. But read the study.  The institutions that released this information are well respected groups (not me). What it indicates to me is that the risks are not just what we compare between intervention modalities. And it should not be hard to understand that prostate cancer left untreated will have side effects eventually. Is there room for error on how much of the above can be attributed to PCa? Possibly. But for the sake of comparing watchful waiting to intervention, we have to look at the long term results not just the short term.

This is great information in my opinion. I don't see any misrepresentation, just cold hard facts. I agree that incontinence is harder to deal with than ED. That's even though I don't have it after all the combinations above. But ED is pretty tough too. I know. It's not a wet spot I miss. But it is possible at some point I was headed that way anyway, or already was beginning to experience it because of PCa.

Tony
Posted 3/30/2009 7:11 PM (GMT 0)
Selmer great points. But regardless of treatment or not, these ED abnomalities will be the same in each of these percentages represented in each modality and in watchful waiting. Let me try to explain this better. Let's assume for the sake of discussion that there are no side effects relating to ED from prostate cancer. Then 33% of men get ED for other reasons. So if 54 in a hundred men who have surgery have ED in ten years then only 21 had it because of surgery. But that's not reality because prostate cancer does cause ED so many of those in the WW group did get it because of PCa. If you search "Prostate+Cancer+Symptoms" in any search engine, any site you go to lists ED as a symptom. If cutting, radiating, or whatever around those nerve bundles can cause Ed so can cancerous tissue around them. And certainly these symptoms will increase with time.

I am not making this stuff up. This is information provided by the US Government, PubMed, and every medical and patient advocacy group in the world. In my post above I have information from the Prostate Cancer Foundation, PubMed, and the National Center for Biotechnology Information. You will also be able to confirm these numbers in European sites as well.

Tony
Posted 3/30/2009 8:35 PM (GMT 0)
It is not clear, and there is room for error in any direction. But when watchful waiting is chosen, most do not know exactly how far the disease has progressed, nor how long they can wait. And we are still awaiting that perfect way to see progression before action (or inaction). I would bet the psychological affect alone could represent 7.5% of ED in the WW group. But certainly knowing that you may encounter these issues anyway, may affect a decision to intervene, or maybe make it easier.

For a younger guy like me, none of this entered my mind when I chose intervention. But it did not look good from the get go for me, either. Half my cores were positive, up to 90% involved, an aggressive grade was present, and my PSA was near 20. I feel "lucky" that I didn't have to make a tough decision tougher by being more in that gray area. I have total ED. And it was the treatments that caused it, no question. At 46 now and a couple years down the road, I am in my prime and ED should not be an issue. On the other hand, I am glad we did what we did, and I did not wait until 50 for screening. It could have been ugly. And I don't kid myself, it still can be.

Watchful waiting is a tougher call in my age group, I believe. The studies suck for guys with 39 years of life expectancy. Knowing that, for many reasons, if you may have ED issues anyway in time might take some of the decision pressure off.

Tony
Posted 3/30/2009 10:51 PM (GMT 0)

Selmer said...
Tony, I agree. The "side effect" of watchful waiting is somewhere between 0% and 32.5%...


Remember now many watchful waiting men are not those with invasive PCa such that it would be impinging on nerves etc. Many are going to go on until age 95 without non-age-related problems.

Selmer


How dare you say that? Remember ED is never naturally occurring. Some how Tony never did answer if he thought menopause was a natural occurrance or not. Yeah you gotta love how some sources are irrefutable but when others side with watchful waiting they're not or are entirely misunderstood.

As I said before lets declare this site right now an official anti ww site and finally be done with it.. No matter what support ever comes for WW lets now and forever in the future declare it verboten here!!
Posted 3/30/2009 11:41 PM (GMT 0)
realziggy, your remarks above sound like a big overkill. i don't feel this site is anti- ww, or anti-seeding, or anti- anything. there are much more surgery related posts simply because it is the overwhelming treatment therapy for PC in the U.S., not just here at HW. People that post here in general just need to remember to be nice and that it is ok to agree to disagree. None of us are doctors or medical professionals in the field of Prostate Cancer (least I don't think so). Give peace a chance, I say.

david in sc

p.s. i have learned an incredible amount of info related to all the treatments for PC, and every version of side affects known to men on this site over the months, and I am thankful for that.
Posted 3/31/2009 12:08 AM (GMT 0)
OK you forced me to say it...Menopause in men is not naturally occuring and I can prove it. LOL.

But seriously there is no correlation between menopause in women and ED in men. If you can show me anything that says ED is caused by age and not from mental or physical causes then I would look at it. But it's irrelevent. I am not against Watchful Waiting. But I am against the notion that we can't share usable information about it and what to expect. I am very much for watchful waiting when the time is right and it will lead to better quality of life. In fact I can't wait to begin mine when I go off ADT. At some point we all use it, but it is not without concerns nor possible ramifications. A sensible person needs ALL the information available to make sound decisions. Regardless of how ED occurs, if anyone is avoiding treatment because of fear of ED then perhaps let Selmer's and your post stand as testimony that we can lose our ability to have an erection to things outside of prostate cancer anyway. Your own argument contradicts the reasoning behind Watchful Waiting as a primary treatment in some cases.

My personal position is that it is an option for about 30% of prostate cancer patients, mostly further on in their years than I. Only as long as the cancer is small and not aggressive. Otherwise intervention makes more sense. If a guy came in here at almost any age with 12 of 12 positive and Gleason 10, he is likely not a candidate for WW. Conversely a guy at 80 with a G6 and 1 of 12 should not rush to treatment. We may not be able to change the mortality rates, but we may still be able to extend life. After all that is what systemic treatments are about. And they do work.

Watchful Waiting is a personal decision. Being careful and prudent with it is wise. Turning a blind eye is not good decision making, either, however.

Tony
Posted 3/31/2009 12:55 AM (GMT 0)
Tony I've just about have ALWAYS recommended surgery for guys your age(40s)for all I've seen arrive her have advanced numbers too. As far as anyone avoiding treatment just because of possible ED issues I would say they're in a minority and much more the younger they are. Of course that is an issue for all ,especially for those who are married, but I think trying to say that WW will cause ED more so than to the general public as normal aging I still say is quite a reach, and is only being done by you to discredit WW.

No my argument does not contradict WW as a primary treatment in many cases. My primary argument has never been about ED alone. It's much more about incontinence, it's much more avoiding all the effects of radical treatments until you feel it is absolutely necessary if ever to submit to them. It's to take into account studies that say for every 49 men radically treated it only saves a single life. It's to take every thing into account. It's also to not rush to treatment, not to panic. I was never towards turning a blind eye. Personally I think Psas should be taken but all the controversy about them and the studies that are out there about over treatment should be given to all men upon dx. I sure wish I had heard early on even then the controversy. Thank god I stumbled upon it before it was too late. That's how I feel about it.

Finally yes i think over time ED age alone does effect men some later than others. I received an email the other day with a quote from Willie Nelson upon his 75th birthday. It was I have out lived my d***. I'll go along with Willie on willies.
Posted 3/31/2009 3:44 AM (GMT 0)
Sidenafil was created as a treatment for pediatric pulmonary hypertension. The rest came afterwards.
Posted 3/31/2009 3:59 AM (GMT 0)
Thank you Swim,
I can only imagine how the secondary use came to light...

Ziggy,
If I mislead you to believe that I was trying to discredit Watchful Waiting, I apologize. My reason for this post had nothing to do with discrediting watchful waiting. I was merely reiterating a written document from several major institutions without preference as to how you decide to interpret it. But make no mistake about it, Watchful Waiting can lead to disease progression and in rare cases death. If you would like to see this in writing I will present it for you or anyone else that would like to see it.

Tony
Posted 3/31/2009 4:10 AM (GMT 0)
Just go to YANA..there you will find several watchful waiting men who progressed. Some regret it while others are comfortable with their decision.
Posted 3/31/2009 4:37 AM (GMT 0)
The Webmaster at YANA, my friend Terry Herbert, was on Watchful Waiting for years and progressed to stage IV.  He is well (I know cause he just tagged me again today on Facebook)  but now on ADT.  he is doing great and was able to get 10 years (he was diagnosed at 54) before intervention.  I love the guy and his contribution to prostate cancer advocacy is huge.

Here is his link:

http://www.yananow.net/Mentors/TerryH.htm

More... Go to www.yananow.net ...Some good some sad stories.  But may God bless these men for telling it like it is...

Tony

 


Posted 3/31/2009 3:07 PM (GMT 0)
You can always find exceptions to anything. On the whole more watchful waiting will cut way down on the over treatments and subsequent side effects inherent in such. As I keep predicting these days of over treatment of radical procedures will be looked back on with much regret in future years.
Posted 3/31/2009 5:18 PM (GMT 0)

Terry is a success story for Watchful Waiting, not an exception.  He was able to get nearly ten years before intervention, which is great.  It is old news that watchful waitings MTBF is average 6.2 year and declines rapidly soon after.  The following study is from the National Cancer Institute:

http://www.cancer.gov/clinicaltrials/results/surgery-vs-watchful-waiting0902

This is why people should not confuse the recent contraversial screening studies on mortality with actual confirmed cancer cases and life extention treatments...There was a 44% improvement in MTBF in surgery (and other forms of intervention) over watchful waiting at year 8 for distant spread, and over 60% improvement for local spread. 

There was a 40% improvement in mortality in treated cases vs. WW. 

That's pretty significant!

Tony

Posted 3/31/2009 9:10 PM (GMT 0)

Selmer it's who do you believe?  Europe or the US?

Still, here is what Johns Hopkins says about WW and who qualifies:

http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders/JohnsHopkinsHealthalertsProstate_526-1.html

When you read the "When to stop Waiting" part you see it falls into the criteria outlined in the NCI study.  In US studies, WW is not expected to last more the 7 to 10 years.  And when you read the links I provided at YANA, you see why that is.  Again I am not against WW, but I do prefer Active Surveillence as a term because you have to keep watching it and eventually move before it spreads.  That is not an easy thing to predict.  PSA is unreliable and Velocity can happen when it's too late to get a handle on the progression.

In Terry's case, he was a typical case that would qualify today for WW in the JH website.  He was 54, Gleason 6, PSA was 7.2, and only a couple cores positive.  He now has incurable stage IV mets and is only 67 and he has all the ADT SE's.  He is still hopeful for 6 more years.  Many of us won't settle for that.  And at 54 it was possible to be cured.  I don't like using Terry in this example, I love the guy and he is my friend.  But he understands where he sits with this as well.  And there are more stories at YANA and the PPML that show the same results or worse ~ some deaths.

The reason I posted this thread is because there may be a misconception that doing nothing is going to be the norm.  People just need to know the ramifications and that WW is not without possible severe SE's.  This is a very tough decision mentally, and if more information is provided, people may make more informed decisions.  We need WW.  It is needed at various points in fighting this disease.  If one makes it the first choice, they have to know it's likely only for a while not forever.  And then what? 

Tony

Posted 3/31/2009 9:24 PM (GMT 0)

David,

I believe that radiation, not surgery is the most prevelant treatment for prostate cancer in the US. In 2001, 50,000 brachytherapy procedures were done compared to 30,000 radical prostatectomies. This does not include external beam radiation (National Medicare Data) published in Dr Dattoli's book. I think a lot of people believe that surgery is the most prevelent treatment if you olny read this forum.

This forum has a bias towards surgery, but that's OK. Yana has a bias towards WW and other sites have a bias towards radiation. You can learn alot by visiting all of the sites and doing your own research.

JohnT

Posted 3/31/2009 9:40 PM (GMT 0)
Thanks Tony and Selmer for the debate...very interesting the various posts and positions that were taken on both sides. There probably will never be an answer that will satisfy everyone, but just the same if you are just recently diagnosed...it is information that needs to be read before moving forward with treatment or without treatment.
Posted 3/31/2009 10:33 PM (GMT 0)

Les you are very welcome...

JohnT,

50% of 218,000 men diagnosed in 2008 were treated with RP making it the most common cancer treatment in the US (save skin cancers).  This accorging to NCI.

Next is radiation, then watchful waiting. 

Tony

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