Long term side affects of EBRT

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  • Steve1961
    Steve1961 Member Posts: 466 Member
    Thanks

    SBRT is out of the question not enough data on it yet fir me ..will talk  to radiologist tomorrow ask what short term side effects can I expect with combo radiation .if I can handle it I will do it if not I will do surgury .i hsve them both booked ..I will cancel one ..radiologist has been at it fir 23 years  done over 3000 hdr brachytherapy ....surgeon has done over 6000 including 2000 robotic .been there 32 years i trust them both ..both from UCSF ...not #4 in the country fir nothing thanks to all ..wish me luck 

  • Steve1961
    Steve1961 Member Posts: 466 Member

    Grinder, Nerve-sparing RP has

    Grinder, Nerve-sparing RP has been around since 1982. It has been the "gold standard" for ORP, LRP, and RALP for years. Nevertheless, it very often does not work. I have read many posts by men who had it and were impotent, claiming it to be a "fraud".

    Now, obviously, RP also works out well for many men. I have read their testimonials too. 

    Yes, RALPs are about 85-90 percent of the PCa surgeries beimg performed. But, the times they are a changin', because now the percentages of men having RP and having RT are exactly the same. Both at 37 percent. Previously, surgery was about 60 percent. But, the skyrocketing recent acceptance of AS cut exclusively into surgery's clients.

    Steve has enough info already to make his choice. We are just adding to the noise. Hopefully, whatever he ends up choosing will provide him a good outcome.

    Stats

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

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    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

    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).

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    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'm tempted to keep searching

    I'm tempted to keep searching all day for where I read those stats, especially since I can "see" the page in my mind's eye. But, I have to pack for a trip and move on. Sorry.  But, consider this, the rate of men choosing AS has gone from less than 10 percent a few years ago to 30+ percent overall now. At my large local hospital system, the chief urologist now says its 50 percent. Well, those increases had to be at the reduction of another choice, and that choice would be surgery, as that is what the diagnosing urologists typically recommended. 

     This is not the exact link, but supports the huge recent increase in AS:

    https://www.msn.com/en-us/health/medical/more-men-with-low-risk-prostate-cancer-are-forgoing-aggressive-treatment/ar-AAxkdyQ?ocid=spartandhp

     

  • mstoriop
    mstoriop Member Posts: 43 Member
    Data

    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.             

  • Grinder
    Grinder Member Posts: 487 Member
    Hopkins

    "Many factors are involved in the return to sexual function following surgery, including age of the patient, having an active sexual partner, whether one or both nerve bundles were spared and amount of time since surgery. When we evaluated preoperatively potent men who underwent nerve-sparing minimally invasive radical prostatectomy, we found that 48 percent of men who had both nerve bundles spared reported successful intercourse at six months and 72 percent at one year following surgery with or without the use of oral medications (e.g., Viagra or Cialis). "... John Hopkins

    The issue here is "nerve sparing". If one or both nerve bundles were cut or damaged, regardless the reason, there was no "nerve sparing".

    If an inexperienced surgeon damages nerve bundles during surgery, he can call it "nerve sparing" all he wants to. He can call it Dr. Grinder's Super Duper Nerve Sparing No-Risk Fool-Proof Prostate Removal Service if he wants to. I can name my cat "Fido" but he still wont bark at strangers.

    All I know is,  despite my prostate was still 197cc compared to normal 25cc, my surgeon said he could spare both bundles and expected them to recover over time with assistance by the vacuum pump. And almost two years later Stubby is rock hard now. Admittedly, he is Stubby now... so I hope Steve is taking the 1-2" length reduction in to account when comparing treatments.

     It depends on what the surgeon says... and it sounds like both the surgeon and the rad onc are very experienced... so I would listen to what he says about prognosis.

  • Steve1961
    Steve1961 Member Posts: 466 Member
    Wow

    all this talk about the woody.i could care less about it .i just don’t want it to come Back .i dont see anyone on here that only did the combo radiation where it hasn’t come back . Makes me nervous..

  • MK1965
    MK1965 Member Posts: 233 Member
    Grinder said:

    Hopkins

    "Many factors are involved in the return to sexual function following surgery, including age of the patient, having an active sexual partner, whether one or both nerve bundles were spared and amount of time since surgery. When we evaluated preoperatively potent men who underwent nerve-sparing minimally invasive radical prostatectomy, we found that 48 percent of men who had both nerve bundles spared reported successful intercourse at six months and 72 percent at one year following surgery with or without the use of oral medications (e.g., Viagra or Cialis). "... John Hopkins

    The issue here is "nerve sparing". If one or both nerve bundles were cut or damaged, regardless the reason, there was no "nerve sparing".

    If an inexperienced surgeon damages nerve bundles during surgery, he can call it "nerve sparing" all he wants to. He can call it Dr. Grinder's Super Duper Nerve Sparing No-Risk Fool-Proof Prostate Removal Service if he wants to. I can name my cat "Fido" but he still wont bark at strangers.

    All I know is,  despite my prostate was still 197cc compared to normal 25cc, my surgeon said he could spare both bundles and expected them to recover over time with assistance by the vacuum pump. And almost two years later Stubby is rock hard now. Admittedly, he is Stubby now... so I hope Steve is taking the 1-2" length reduction in to account when comparing treatments.

     It depends on what the surgeon says... and it sounds like both the surgeon and the rad onc are very experienced... so I would listen to what he says about prognosis.

    Erections

    Either definition of erection was one of those that that was minimalized or they were cherry picking patients, 72% of patients having sex at 12 months is to inflated and gives false hope to those who are looking for surgery as their primary method of treatment.

    Reality is way different.

    That is like winning the big lottery. Every body has chance (if they play) but, just a few are winning big.

    In RP everybody is winner, incontinence, impotence , any combinatoon and anything in between.

    Someones is winning less, someones more, but everybody wins.

    No such lottery in the world where everybody wins.

    MK

  • Tech70
    Tech70 Member Posts: 70 Member
    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 

    Makes Sense

    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

  • Clevelandguy
    Clevelandguy Member Posts: 980 Member
    What's important

    Got to agree with you Steve, my main concern was which method would get rid of the cancer as a top priority and then what kind of possible damage would it do to my body.  Everyone has to make there own choice and then live with the consequences good or bad.  There is no right or wrong, better or worse treament, just pick one and live with the known side effects.  It's your choice & your body.

    Dave 3+4

  • Grinder
    Grinder Member Posts: 487 Member
    quoted

    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.

  • Grinder
    Grinder Member Posts: 487 Member
    Complete RP discussion

    Steve... this is a link to the Brady Urological Institute at John Hopkins that gives a VERY detailed exposition on what to expect before, during, and after Robotic Prostatectomy. The amount of information on this site is considerable...

    https://www.hopkinsmedicine.org/brady-urology-institute/specialties/divisions-programs/minimally-invasive-surgery/prostate-cancer/nerve-sparing-robotic-radical-prostatectomy.html

    This is a good site for anyone considering maximizing their outcomes after RP.

    However, it is still not a substitute for your own doctor's advice... and only covers the immediate post-op preparations.

  • graycloud
    graycloud Member Posts: 42 Member
    RP success story

    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.  

  • Steve1961
    Steve1961 Member Posts: 466 Member
    Old Salt said:

    Yes

    Some rad oncologists recommend Space OAR, but others don't think it makes a difference. I suppose this depends on the actual radiation plan and the radiation technology used. 

    If your specialist does want to use it, I would go along. If not, let it go. It will save some money.

    Damn why is so tough to d

    Too much information I watched a video on that space OAR no biggy but they stick a big **** needle right into the apex of the prostrate to numb it     really right into the apex where the tumor or tumors are.  Not good in my opinion with my luck  they would inject it right into the tumor then what damnnnn I’m tired of seeing and reading all this bad stuff 

  • Grinder
    Grinder Member Posts: 487 Member
    lucky

    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.

  • Steve1961
    Steve1961 Member Posts: 466 Member
    edited May 2018 #37
    Andddd

    i just seems like to me that the majority of people opted fir surgury ...vast majority...I hate being the minority ...there has to be a reason fir it .even though the radiologist I am seeing is far more booked than the surgeon ......hmmmm by almost 2 months 

  • RobLee
    RobLee Member Posts: 269 Member
    First line approach

    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.

  • Chuckect
    Chuckect Member Posts: 45
    maybe i'm the lucky one -- no rad or surg options

    was not d x'd with stage 4 metastatic prostate cancer until i was 79.. my options were chem,zytiga,xgeva, lupron,prednisone.. didn't have to wory about ed or side effects.. the only problem is that my PSA seems to jump up above 50, but it's  always when i get my nose in my bong and to much bourbon in my belly.. so study hard keep an eye on effects stay active make good decisions and enjoy life to the max..

    the hair is pre-chemo and i'm 2 years into this cancer stuff and still alive -- good luck everone

  • RobLee
    RobLee Member Posts: 269 Member
    The two faces of prostate cancer

    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.

     

  • fullmoon50
    fullmoon50 Member Posts: 40
    A Tad Ahead of You

    Hi, Steve. My husband was diagnosed this past December with PSA 34 and Gleason 10. All biopsy cores were between 45%-80%. Because of other health issues (hypertension, diabetes, episodes of congestive heart failure) and his age of 65, doctors, including a review by the tumor board, concluded that ADT and EBRT are the only way to go for him. He has locally advanced PCa with 3 nodes enlarged. 

    I don’t envy you all the choices you have to make. Perhaps the radiation oncologist was being cocky, but at about age 50, he says he has seen no bowel issues post radiation since he was in residency. He said urethra strictures come with brachytherapy and not EBRT. My husband has an “it is what it is” attitude and says he can’t worry about worst case scenarios since his treatment options are limited. When I asked about Space OAR (Organ At Risk) the RO agreed to it despite having seen no radiation proctitis in his practice. The Moores Cancer Center has a new Halcyon to deliver the EBRT. Paul had his first session today and all went well. As for the future? Que sera sera.

    As for SpaceOAR, Paul told the medical team that the last time he had asssumed that position was when the aliens had abducted him. The young female Resident thought he was stoned. Nope. BTW, he said the hydrogel placement was no big deal. I am not married to a macho guy, so please don’t worry about that should you choose it. My best to you. I hope you can clear your thoughts long enough to hear your intuition guide you.