Long term side affects of EBRT

Steve1961 said:

Stats

nay I ask where you found these stats about the percentages RP and radiation my wife is curious an so am I thanks 

I read it about a month ago,and think that it was an analysis written by Allen Edel, a well-know PCa blogger, from a very large scale study. Of course, I can't find that I bookmarked it, so, now I've got some, maybe a lot, of searching to do. But, it is out there, and I will find it for you (and bookmark it this time).

Hello Steve.  I do not post much but read the forum frequently and respond if i feel i can offer a thought.  I know you have been on this site for awhile and not only have you done extensive research you have been the beneficiary of quite a few very astute members thoughts.  Many of the same assisted me.  My journey is documented elsewhere and can be found if you would like.  I will not begin to offer my opinion to you as to your decision on treatments.  As everyone continually says it is your choice and will be fine for you.  What I would offer is my opinion that there is some very good data, at least to my thinking, on SBRT.  Dr Katz has published 5,7,anf 9 year studies and I saw somewhere that a 10 year study is coming.  There are also some studies comparing the effects of SBRT along with other radiation therapies.  What I found interesting in my thought process to Cyberknife was the relative linearity of stats in the Katz studies.  While the control population diminished for "normal" mortality reasons, the biochemical faiure rate remained low.  The late grade rectal and urinary toxicities are virturally unchanged and low.  I guess you could say that for the almosr 10 years of study the regression lines for the main indicators are pretty flat.  If your reason for discounting SBRT is only because of insufficient data I personally did not see that in what I found.  I wish you well in your decision and treatment I'm sure you will come out on top.             

Steve1961 said:

Space OR

It’s called space OR anyone heard about this apparantly  a gel that they want to inject between my rectum and prostate. .05 inch gap between the prostrate and the rectum protecting it from harmful radiation it hardens and slowly dissolved over 3 months and is passed thru your urine 

When I had some erroneous pathology results that had me considering SBRT after being on AS, I researched Space OAR.  To me, it just seems logical that it could be useful.  The prostate sits right against the rectum and this separates the two by about 1 cm.  Seems logical there would be less chance of damaging the rectal tissue

The quote is from the Brady Urological Institute at John Hopkins.

https://www.hopkinsmedicine.org/brady-urology-institute/index.html

It only mentions up to one year in the study. As most urologists will tell you, ED recovery occurs mostly one to two years, as was my case. That would make the percentages even greater for recovery.

Recovery is defined as sufficient erection for penetration during intercourse.

Steve:  My husband is almost 3.5 months post surgery for a robotic prostate removal.  He went in with Gleason 9, apprehension, fear, etc.  His surgeon and specialists were with Memorial Sloan Kettering in NYC (we live in the SE).  Researched around the world.  We believe we ended up at one of the top prostate cancer centers in the world.   He is doing fantastic.  Very minimal ED side affects - in fact, he doing well without the "little blue pills" now.  He's improving so much in the bladder area. He's only leaking now with exercise.  If you decide on surgery, be sure you have taken every precaution to get your body ready pre-surgery.    Exercise, good healthy diet. Walking is the gold standard for increased blood flow to the pelvic area pre-surgery.  Does your prostate group have an ED specialist to meet with pre-surgery?   MSK has the top ED specialist in the nation, and he has been a blessing for my husband's recovery.    I don't know how long it's been since you had your biopsy, but you need a minimum of 120 days for the prostate and nerves to heal from the biopsy.  The nerve bundle needs to be "healthy" presurgery for the best outcome.  Also, if you decide on the RP, start pelvic floor physical therapy before surgery, and continue after surgery.  My husband started 3 weeks post surgery, and his PT group are literally re-writing their prostate PT guidelines based upon his excellent recovery.  We are one of the "good outcomes" with robotic prostate removal.  He was so negative pre-surgery about the whole process.  Everything he read was negative.  But he has worked hard on his recovery, continued to improve his physical health, and he's literally in the best shape of his life.  As his oncologist/surgeon said, recovery after RP is a process.  The speed and endurance is up to you.  I wish you the best in whatever decision you make.  

After reading graycloud 's post, I wish I had started recovery BEFORE the operation... maybe my recovery period would have been a lot shorter.

My surgeon gave me a lot of good advice, but it was mostly all post-op advice. And I didnt know about this forum till long afterward when I asked the guys about "use it or lose it". 

The only caveat I have is watch out for a different urologist than your usual urologist and the surgeon... The clinic assigned me to a urologist that "specializes" in ED. What he specialized in was taking your money when your recovery is progressing just fine , because my insurance paid for everything BUT ED related issues... even if they were the result of the PC operation!

So I canceled that pretty quickly. I was way more concerned about incontinence recovery... the ED recovery was just a bonus anyway.

A lot of guys choose surgery first and leave radiation for a backup plan (such as I did) if surgery can't get out all of the cancer. Yes, yes, I know the radiation advocates say that there are "options" after failed radiation... focal ablation and cryosurgery and even salvage surgery, but these are not mainstream treatment plans... otherwise more guys would certainly choose radiatin first and leave something else as the backup plan. In reality, most guys just want to get the prostate completely out of there. It is not just a "knee jerk" reaction as some say.

Granted, there are cases when surgery is not practical, and some cases where radiation is not the optmal choice.  Talk with some other cancer survivors (not just prostate) and in many cases they required to undergo surgery, radiation and chemo... all three or in many cases two. Same goes in this case.

What the general public doesn't know about, and many (dare I say most) newly diagnosed victims of PCa aren't aware of, is that prostate cancer is two very different diseases. Once it goes beyond stage T3b (mine) it becomes a totally different disease with totally different outcomes. Stage 4 prostate cancer is essentially incurable.

Most guys who fret over treatment, even fight about treatment choices, have some G6 or G7... forgive me if I step on anyone's toes here... cancer that was easily diagnosed by DRE or on the first biopsy, have time to be indecisive about treatment, and even gripe when the outcome of treatment comes up short of what they expected.

Then there are the "in between" guys, maybe like me, G8 (4+4), maybe (4+3) or (4+5), with a solid tumor that took forever to get diagnosed, dispite certain warning signs like steadily rising PSA. We are told that we are not even an eligible candidate for certain "popular" forms of radiation treatment, maybe even beyond surgery. Or if we have surgery, we are told that we will require radiation and in many cases, with HT added. And if there is SVI, LVI or positive nodes involved, it can quickly jump to stage 4.

Which is where you are, Chuck. You probably had some warning signs a few years ago, but got the medical runaround. Standards of care and conservative medical ethics dictate that "it isn't cancer til they know that it's cancer". And it doesn't take very long at all to get there. It just breaks my heart when I read of other guys who had a borderline PSA (around 4) and maybe missed a PSA test one year because, lets face it, we have a life, then suddenly the PSA is in the 20's or fifties or hundreds, and the docs are saying why didn't you do something about this sooner. And all we can do is grit our teeth and say to ourselves "I tried, believe me, I tried".

So then you're at stage 4, and there isn't much that can be done about it. Prolonged HT can keep you alive for a few years, until the cancer becomes castrate resistant. The docs try to vary the drugs, like when Scotty would modulate the shields, but eventually the shields are down to 20%. The cancer is so widespread throughout the body that surgery is out of the question. Radiation spot treatment can zap individual tumors where they appear, but that's mainly to reduce the endless pain, as whole body radiation would be counterproductive (they experimented with that in the fifties and sixties).

So you're left to just accept your fate. Live life as best you can. Stay high if that helps you face the inevitable. Stage 4 metastatic prostate cancer is incurable. Some guys, but very few, stay alive for a decade or so on HT and chemo, but life is far from comfortable. And with comorbidities, like Chuck I know you're in a wheelchair, and other diseases that pile upon the frail, it's hard to call this living. And now because there are so many able bodied people who have too much time on their hands, law enforcement is trying to take away the one thing that can help during the final stage of life... because of a widepread "opiate crisis."

Chuck, I'm glad you have such a pleasant attitude after all that's happened to you, and that you are willing to contribute here in the forum and in the chatroom. And to the guys who like me can only realize that "there but for the grace of God go I", we can see that there were probably only a few months between stage 3 and stage 4. And the guys who get their cancer successfully treated and life goes on, but you get to gripe about it, what can I say? Consider yourselves very fortunate.