Why wouldn't most have surgery??

garyi-

Wait no longer -there are several such studies. Perhaps the most interesting was a randomized clinical trial called ProtecT. Here's some info about it:

/pcnrv.blogspot.com/2016/09/patient-reported-outcomes-from-protect.html

As you can see, it exploded three myths, which nonetheless continue to be perpetuated by some urologists and their patients:

Myth #1: The side effects end up about the same for surgery or radiation
Myth #2: With surgery, you get the side effects all at once and steadily recover; with radiation, the side effects come on steadily and may hit you many years later.
Myth #3: Over time, erectile function is about the same for surgery and radiation.

For a long time now, we've also had the results of PROSTQA, which, while not a randomized trial, suggested those myths were untrue.

Interestingly, the ProtecT study found that levels of anxiety, depression, and QOL were not significantly different among the groups (surgery, radiation or AS). Most patients do not regret their treatment decision.

LeoLuna said...
Ok, Wow, this was a lot of answers to go over....I think I've read them all three times already...lol

You asked a question that comes as close to political debate on this forum as you're likely to ever see. I've seen people come to fisticuffs LOL over which treatment is best Leo. If it we weren't on a computer....they'd be a fight out back after school.

But seriously....one of the questions you want to ask yourself (which you're already doing, I don't really have to tell you to do this)....is...."If primary treatment fails....which secondary treatments would I dislike most?"

However...in your case...you are most likely to be cured no matter what course you choose. Therefore...you have to decide (if you fail to choose AS, which there's no harm in...many of us in your shoes weren't comfortable with it)......."After I am cured....would I rather have had surgery....with my body having never been exposed to radiation?" OR "After I am cured....would I rather have had my body exposed to radiation...with my body having never have been operated on?"



You already have a notion of what's best for *you*. (most do). Keep educating yourself.....

Take care

it really gets down to this: your body, your choice.

In your case, any of the options open to you will work.

So the question is: What are you most comfortable doing? Which do you think will work best for you?

In my family all three of us brothers have PC. I chose beam radiation, one brother chose surgery, and one chose LDR brachy. Five years later we all have low PSA, no signs of recurrence, few side effects, and we're all happy with our choices.

Andrew

Apologies to the OP for this sidebar conversation.

garyi-
Everyone would like to see more, but ProtecT is the only RCT between radiation, surgery and AS that we are ever likely to see, and none will ever be done in the US. The authors have promised an analysis based on actual treatment rather than intention-to-treat, which will undoubtedly be more in favor of radiation and AS.

Patient-reported outcomes are actually the best way to evaluate these issues. But it is a lot more work to collect and track the data. Physician reported toxicity outcomes are much more subject to several kinds of bias, but is usually all we get.

Retrospectively, I can think of several reasons I wouldn't have a RP.

1) Total ED (even though I knew this would be the case going into it, because of my particular situation).
2) Significant shortening of my penis, though some authorities claim this doesn't occur.
3) Squirting of significant amounts of urine during ejaculation. If having to inject a drug into your penis to get an erection doesn't disrupt the mood, squirting pee in certain situations sure can!
4) Peyronies. I don't think that RP is directly responsible for it, but my Uro sure didn't mention that it could happen. Happened for me about a year after I started using TriMix. Now, my half-useless penis is pretty much totally useless.
5) Although I wouldn't say I'm incontinent, I'm not the same as I was before surgery. I have to use a pad per day to catch dribbles, but some Uros consider this to be fully recovered.

Unfortunately, I am likely micro-metastatic, and probably was at the time of surgery, but there was no way of knowing that when I had surgery. I still think the correct decision was made for surgery with the information available at the time. If the surgery had cured me, the side effects from it would have been worth it. But as I think of it now, had the surgery cured me, I probably would still be bit***** about the problems that came with it!

I'm not suggesting that these problems will happen to everyone who has surgery, but it is important to know what can happen.

Randy,
Welcome to the club.
You are young, your Gleason and your percentages look very good.
If I would be in your shoes, I would keep all my options open and stay on AS.
Your choice of radiation is also good and viable option with tolerable SE.
AS gives you time to enjoy everything what life has to offer preserving your quality of life. You might have 10-15 years before treatment is needed and you will appreciate all the good time you had.
Never is to late to elect treatment when it becomes necessary.
Your question about choice of surgery is open even radiation and is called salvage surgery. Yes, it is possible to do it after radiation and more and more surgeons are performing it.
I had RP T age 51 almost 10 months ago and I deeply regretted it. My ED recovery did not start yet? Absolute zero down there.
Before surgery never had any problems with achieving and maintaining erections as long as my wife and I wanted.
I am healthy, non drinker, non smoker and not on any medication.
Also, I last 2+ inches of penis length and lots of girth so my penis looks like when I was 10 or 11. I have second navel down there here penis used to hang.
MK

Subdenis said...
However, I hope to delay SEs and hope the researchers get better at interventions. However, check with me tomorrow and I might have changed my mind. I have time to decide is the good news. I can use AS to really explore my options.

Thanks, Denis

That's an excellent observation, Denis. In so many major medical decisions in which treatment can have profound side/after effects, these days it makes great sense to delay treatment where medically acceptable. Medical science is growing so rapidly in these fields that a lot can happen in the time you're on AS, and by the time you do need interventional treatment, there may be even better modes of treatment available.

A good example for many of us is the evolution in external beam radiation therapy over the past 5-10 years. We went from conventional IMRT, with its 35-40 treatments to SBRT at only 5 treatments, and with even better efficacy. While there are fewer new developments in surgery, even those surgeons now performing RP will have more experience in the ensuing years.

LeoLuna - below is the website which will explain exactly how to do it. Also, if you tell your Dr. you'd like your slides sent to JH for a 2nd opinion, they should know how to do it. Just in case they don't, here's the link.

http://pathology.jhu.edu/department/services/secondopinion.cfm

LeoLuna said...

I've been doing a lot of reading here and the decision on treatment
has been very difficult for me. Initially I thought, "of course I'm going
to do radiation because there was no way I'm going to do a surgery"
Then I found out that if you do radiation, your salvage options are
really limited.

What I don't understand is why most men who are around my age or
younger wouldn't just have the surgery. Now, I realize that the side
effects are more severe with surgery but wouldn't the ultimate goal
for anyone with cancer be to have it cured. And since there is always
a chance for it coming back with either treatment wouldn't you want
to pick the treatment that would have better salvage options...................
Blessings,
Randy

It is a dificut thing to figure out, especially when our emotions are involved and there is more than one possibility for what is correct. And the right choice partly depends on factors you can not know about yet. To really know,you need a path report, or you need to have treatment and then if it recurs or you end up with mets, then maybe you possibly should have chosen the other treatment. But still no guarantees.

Let's say you were like me: an aggressive cancer that had a pretty fair chance of having already left the barn. But you tumor palpates really small and your uber experienced surgeon feels there is a good chance it is still contained and if it is he can offer you a cure. Plus if it is already escaped, you will have the path report telling you if you need some RT and/or HT. Sounds pretty good.

But then the agonizing starts. This person knows that statistically, there is a pretty good chance it is out. If it is out, you are then going to first reap all of the possible- even likely- life changing SEs right up front and possibly for life, then you are going to have to add whatever SEs come from RT on top of all of that, especially if your doc thinks you need immediate treatment before you can do much healing. Then the thought might occur: well wait a minute, can't RT also offer pretty good odds of a cure? Plus if it is already out in the margins and SV, - which seems fairly likely- wouldn't the RT also hit those areas where as surgery could easily miss the margins?

And if all that is true, then why not just go ahead and get the RT up front as opposed to counting on RT to save you if surgery fails? Why would one not get the treatment he has as a backup for a failed surgery right off the bat? If it can save you once surgery has failed, can it not also save you before they ever cut on you? So why plan on doing both, especially if doing so locks in all of the worst(possible) SEs?

Add to the above the fact that there are indeed salvage options for RT. If one of them is surgery- and it is possible- we know that surgery after RT is not as good of an option as surgery before RT. It is tougher to do, and though I'm not sure, perhaps the SE profile is worse compared to primary surgery. But same thing with RT salvage: if you are going to have RT, better to have it before surgery, as far as potential SEs go. Those SEs of surgery are certainly not made any better by piling RT upon the already damaged tissues.

And also remember, there are salvage options after RT other than surgery.

For me, in retrospect, the most important thing to figure out would be if there is any significant long term survival or recurrence advantage to either treatment over the other, in relationship to the risk level of the PC I had been diagnosed with. I say significant because I would trade some small % increase of risk of recurrence(if that actually even exists, and if it is actually not the opposite) with RT rather than risk the more likely odds of very onerous SEs of surgery. But that's just me, some feel just the opposite. And I'm sure I feel more strongly about that since I have reaped some of those nasty SEs, all for the hope of a more likely cure IF it was contained.

If it were me doing it over, I would really concentrate on researching the cure rate differences in the 2 treatments, rather than even considering the advantage of being able to add RT later. But plenty of others see it differently, and who knows they may be right.

ARangel14 said...
I've debated since last night to even participate in this discussion but decided to put my two cents in even though mine will be an unpopular opinion but I'm remembering we are all just sharing opinions, there's no right or wrong, just opinions and for some of us our opinions are skewed by personal experience as mine will be. Hubby basically had same thought process as you, why not do surgery because he'll always have SRT in his back pocket IF surgery didn't get it all. Truth be told because of other past medical history he was afraid of radiation more than surgery. Surgery had all the SE's you usually hear about except for the incontinence (he got lucky on that one). Here we are three years later and he's having to do radiation anyway.
I'm looking at your signature and on paper it looks good and as many have said would be prime candidate for AS, UNLESS, you turn out like my husband, who also looked really good on paper. He looked so good on paper doc was sure he'd get it all w/ surgery and never have to think about PC again. His PSA was lower than yours, he had more cores positive but here's the kicker of the story, his G6 doesn't BEHAVE like a G6 (how crazy is that?) no he didn't have slides sent out anywhere else but two different labs graded him as G6, however, on genome testing he came back right on the line at moderately aggressive. If you're considering AS or surgery I recommend Decipher or Prolaris testing (there's different views on that one too as to which is better) to see if your G6 is actually acting like a G6. I would want to have that peace of mind.
See now why my view is skewed? My husband's situation is rare but it happens and you don't want to be the one it happens to, thinking all will be well w/ AS or surgery when in reality it turns out you fall into that category. It's just a tale of caution and more to put in your research bank to look into so you can make the best decision for your situation. Whatever you decide has to uniquely fit your situation and comfort zone. I just wanted to provide some more information for you.~Miki

Miki: Good grief, what a kick in the groin! PSA 4.1, G6, RP and still needed RT/HT! Really sorry to hear about that! You just never know with this disease!

LeoLuna, we all have different tolerance of anxiety. Personally, if I were your age, I would reject the idea of active surveillance. Just watch it! Watch it do what? Metastasize is what cancers do. Admittedly, a 3+3 will not metastasize any time soon. However, as you read here often after the whole prostate is removed at surgery the tumor is often upgraded. So you might actually have a 3+4 or even a higher grade tumor. If you were 74 then active surveillance would make a lot more sense.
I myself chose surgery even knowing that cure rates are the same with surgery or RT and side effects less with RT. In my case it turned out that I had positive lymph nodes, which would never have been known if I had just RT so it mattered to me to know.

Now, it turns out that I actually am a doctor but this is not medical advice, just what I would do if I were in your place: have the surgery (or at least RT), don't just watch it.

Argent said...
Metastasize is what cancers do. Admittedly, a 3+3 will not metastasize any time soon.

Actually 3+3 will probably not metastasize at all (at least to any significant degree). From the AUA/ASTRO/SUO guidelines for clinically localized prostate cancer (page 16): "While Gleason 6 disease may have genetic and genomic abnormalities of disease with metastatic potential (though unclear if clinically significant), substantial evidence indicates that the majority of Gleason 6 prostate cancer has limited or no metastatic potential and does not pose a threat to the patient’s life. Most Gleason pattern 3 cancers lack the characteristic genetic aberrations associated with malignancy. ... Long-term follow up studies of very low-risk patients initially managed with active surveillance have shown a metastatic progression rate of <1% at 15 years."