3 Myths about radiation vs surgery shattered by the ProtecT trial

Shattered?
Untrue?
Dunce?

All pretty strong statements which seem to imply that other data sets which don’t support this one are nothing short of being absolutely wrong. I cannot concur. Few things in life, or in medicine, are so absolute...and this report did nothing to sway that perspective.

The elements which made this a Level-1 study did not necessarily factor into the “mythological” outcomes raised in this post. Indeed, by the authors’ own admission, there were irregularities which absolutely affected accounting for those outcomes.

I’m not so quick to discount the accumulated evidence which preceded this report’s recent publication.

I would like to see research which helps uncover and combat the utter degree of randomness of PC treatment side effects which seem to affect men.

A light in the dark...takes but a spark...all is well in a kingdom...where horses...do not sell....

Bobby Mac said...
I can't logically accept the RP 46% incontinence percentage at the 6 month time point, based upon what I have seen on this site, books I have read, and other sites.

I believe there may be questionnaire risk involved?

Yet this is the highest quality evidence we have to date. I only presented one measure of incontinence - the # using one or more pads. The full study includes several measures. Certainly, if one were to look at the measures of stress incontinence, it would be quite a bit higher. Also, 6 months was the time since randomization, not treatment, and may reflect an earlier stage for those who waited longer for treatment. In fact, they were required to be treated by 9 months, so a few may have not been treated, pulling down that number.

The number that gave me pause was the 20% or so who continue to be incontinent long term. I've met with Uros who claim their percentage is closer to 10%, and that may be true. I doubt that many of them who make that claim base it on validated questionnaires that patients must fill out (which is seldom done outside of a clinical trial), but are just saying that they get complaints about it from 10% of their patients. However, if it is true, imagine how poorly all the other patients are doing to get to the 20% average!

The questionnaires they used (like EPIC) have been fully validated, and are standard among urologists and ROs.

Redwing- I'm trying to follow exactly what you have stated. Empty in back-full in front. I'm only on my 13th treatment today so still have a ways to go.(28 exactly not counting today). My urinary issues have already gotten worse so now taking Flomax to help. (only confirms the decision not to have BACHY)

It seems as though Redwing and I are pretty much the only ones on the path we've chose being G9 and going with (IMRT+ADT) I admit that that gives me some question about the treatment I've selected but for me (and this is based just on what I've read and seen here on HW) I don't see a lot of guys with HIGH RISK that chose RP that didn't eventually need HT of some kind. It doesn't take long to go through signatures and see this. I tell you this only because I've been trying to find guys that are HIGH RISK G9 that have chose the treatment I did. Redwing is basically the only other G9 one.
I even made a post asking for G9 guys that chose IMRT+HT to respond with their experience. I got a few smart *** remarks that some how G8 doesn't qualify or something to the sort.( By the way , why would I send my slides to someone that is going to down grade me to an 8 if the treatments aren't different) There just aren't too many G9' here that have gone the route we have. (having said that I hope some will come out now and prove me wrong).

All I know is ,I'm not as smart as some here and I don't have the long time experience that many here have, but I'm not stupid either.

For me I can get all wound up with studies and %'s ,which treatment is better and all that stuff. It doesn't help me,it only gets me worked up.

Aside from the information that I received when I first got here and the invaluable suggestions I got and there were many....when it all boiled down to my specific case (after I chose my treatment team), it was my drs that I listened to.( By the way.there must be other guys like me that can't afford to fly all over the country to see the best experts there are). The best advice (in my humble opinion) is to tell the "new" guy to find the best dr he can find. I was able to travel to Seattle to see very experienced Drs and in the end I was told I could get just as good of treatment right here where I live. Of course I wasn't a good candidate for RP. Then they tell me I'm not a good candidate for BRACHY either.

It gets difficult to hear that the "triple play"is the best for HIGH RISK guys when I find out it's not going to be a good thing for me.... Or I don't understand if you are informed....why would you go for RP if you are G9. Rt will more than likely be coming down the road. IT really doesn't MATTER! If I'm HIGH RISK G9... there is a greater than 50% maybe higher chance that I will eventually have a BCR sometime in my life. It might be in 10yrs or 5yrs or whatever. Then there"s ADT2 ,ADT3, Provenge,Zytiga,Geno-therapy,Chemo ,stem cell and on and on. Even testosterone being used to fight PC maybe?

I'm going to take some advice from a guy here on HW that has gone through or is going through the same treatment as I and just try and be here to welcome the new guy that is sacred to death when he first hears those words PC. And the only thing I can really do is give my experience and tell my story.

I've only been here a short time but it didn't take long for me to see that there is a great debate going on here. Debate on, recite articles and studies. No body has the "RIGHT" answer.

The best advice I got here was "get a biopsy"....from there on I was told so many mind blowing things about what would be best for me and you know what ...I can only find (one G9 guy) that is going through the same treatment as I.

So... now that I have ranted on "again" ..... What was the question. My mind isn't working like it used to !

Fight on brothers!

The Artist One - Mark

Artist Mark -

Your emotional state is all too familiar. Remember that this forum is in no way a random sample, or even remotely representative of the full spectrum of PCa patients or those treated. This forum is a bunch of us, self selected to be here. We have a certain inquisitiveness, some questions, some experiences, and oh so many well meaning agendas. Thousands of men are diagnosed, treated with various methods, and go on with life having various outcomes, to which none of us here are privy. The people here are not very many, really, and it is a small community with its own shared culture, with adherents and heretics. Don't let it get to you very personally.

We all are afraid upon diagnosis, none are certain of treatments. We select treatments based upon the best evidence we have, our doctor's recommendations, our perceptions of all of that, our biases, our assessments of treatment side effects. Sometimes we're right, sometimes wrong, sometimes the side effects are worse for us than expected, or better. There are no guarantees in this, as there are not in so many aspects of life.

This forum has been a love/hate thing for me for a long time. I appreciate the experiences of others. I struggle with the way some people come across. I try to share what I know, what I've experienced, and have totally felt like a lone ranger. My case is fortunately a rare one, but there are other G9s here in similarly difficult situations. I have explained repeatedly why I chose what I chose. The doctors I talked to gave me reasons for their recommendations that made sense to me. I went the direction I did for good reasons.

So, what if I'd flown somewhere, insisted on a different plan, insisted on HDR + IGRT along with HT? Would I have a better outcome? NO ONE can know. Maybe. Maybe I'd have had disastrous urinary strictures. Maybe not. Maybe I'd have had no side effects at all. What if I went for the surgery? Would my case have proven to actually be fully contained, negative margins, and cured by surgery? Unlikely to be sure, but maybe.

Maybe. Maybe. Maybe. Maybe. A thousand "maybes". No certainty. Much more has been written and said than is known.

My dear colleague then, you have embarked on a path. It is a good, decent path. Is it the best path? You'll never really know, and even the benefit of hindsight can't tell you how you'd have done with other paths. It's very likely to be a good path, for you, with what you know. Excel in that path. Don't peer through the woods to see where the other paths went. You'll never find satisfaction there.

Since you're on the path, it might be good at this point to peel away from this forum for quite some time. You'll likely find equal measures of pain and pleasure by participating here. I stay because the gratification of helping some new people outweighs the considerable irritation and frustration that comes along too.

I stay here in the hope of helping new people, merely by sharing my experiences. And, to some degree, yes to challenge certain dogma, certain generalizations, certain attitudes that come through. I've met some wonderful people, people I consider life-long friends, through this forum. Even some with whom I may occasionally have disagreements! We have to be able to disagree without being disagreeable. I'm not always successful at that, but I try.

Finally, if you'd like to chat (and I think that might be helpful), drop me an email to the address in my forum name. We can exchange phone numbers. There's actually quite a few people on the forum that connect in that way too.

Oh, and regarding urinary urgency, that ramped up for me around the 3rd or 4th week most noticeably. By the end, I was up 7 or 8 times a night to urinate! That resolved within a month of the end of treatments, down to 1-3 times a night. Lately, it's down to 1 and many nights none at all. Talk to your RO about it if it's bothersome. They have ways to help with various side effects that can come from radiation therapy.

Yeah ,that's what I was thinking...average 20% ...wow.

sheepguy said...
Yeah ,that's what I was thinking...average 20% ...wow.

Actually my thoughts were that the RALP group did remarkably well against the Active Survellience group. This for me is a better benchmark than the actual percentages.

JNF said...
I am nearly six years from having the double radiation whammy of HDRBT and IMRT. The only side effect I have is reduced ejaculate. I know many men who had surgery and, though anecdotally, most have either some degree of incontinence, ED, and sometimes both.

Maybe I was the lucky one and they were all the unlucky ones, but many studies are in line with what TA has reported that generally radiation therapies have less severe and significant side effects than surgery. My urologist was right up front on that aspect when we discussed all my different options.

Also I seem to remember that the basic definition the urologists use for being continent is needing one or less pad a day. To someone who has never needed even one pad, that definition appears to me as being incontinent.

I look at it the same way. In fact, though I really NEED zero pads per day, and rarely bother with one, I still do not truly consider myself fully continent- just because I must be on the alert all day, ready to clamp down very quickly if I get some sort of spasm. And of course I have to guard against(pretty much a reflex by now) any stress like a sudden move. Admittedly it takes very little effort, just a slight squeeze, to pretty well take care of that and hardly qualifies as a problem any more. Still, I am not like I was and a lot of UROs might call me a success, and continent for their stats. Now as for sexual function, fahgettaboutit.

Artist Mark and Redwing57-

I really liked your last two posts-

thanks!

rf

An38 said...

Tall Allen said...

Bobby Mac said...
I can't logically accept the RP 46% incontinence percentage at the 6 month time point, based upon what I have seen on this site, books I have read, and other sites.

I believe there may be questionnaire risk involved?

Yet this is the highest quality evidence we have to date. I only presented one measure of incontinence - the # using one or more pads. The full study includes several measures. Certainly, if one were to look at the measures of stress incontinence, it would be quite a bit higher. Also, 6 months was the time since randomization, not treatment, and may reflect an earlier stage for those who waited longer for treatment. In fact, they were required to be treated by 9 months, so a few may have not been treated, pulling down that number.

The number that gave me pause was the 20% or so who continue to be incontinent long term. I've met with Uros who claim their percentage is closer to 10%, and that may be true. I doubt that many of them who make that claim base it on validated questionnaires that patients must fill out (which is seldom done outside of a clinical trial), but are just saying that they get complaints about it from 10% of their patients. However, if it is true, imagine how poorly all the other patients are doing to get to the 20% average!

The questionnaires they used (like EPIC) have been fully validated, and are standard among urologists and ROs.

The uro that treated my husband is probably one of the best in Australia and he does do standardised follow up questionnaires. His results are found here.
www.phillipstricker.com.au/as-a-doctor/evidence-based-results#

I was going to comment on this data posted from Oz: At least this Dr. is publishing his results for all to see. What I found most interesting was the ED data, particularly how it trended against AS patients. While both the surgical patients and the Radiation patients had worse ED over the long haul than did untreated men, the differences weren't all that great. We want to forget that most men, as we age and get past our 60th birthday, do see some degradation of sexual potency as a function of age. Looking at his graphs, it certainly suggests that the degradation due to surgery compared to untreated men isn't all that large at the same age.