Long term side affects of EBRT

Steve1961
Steve1961 Member Posts: 301

well thought I was heading for mono treatment ..until 3 weeks ago...now it’s it’s either surgury which they feel very confident it will be successful..or it’s radiaTion combo  ..1 hi dose internal and 25 low dose external.havent had the chance to talk to radiologist yet hsve app on 23rd..anyone know where I can find out what exactly are the chances of secondary cancer like bladder or rectal after 10 years due to radiation therapy ..I have read many things ..anywhere from a slim chance to after 12 years almost one inevitable ..I hear u need to be monitored closely grt a colonoscopy every 4 years and your bladder tested every three years ...I mean are these the things they aren’t telling u until after the therapy is done ..I need to know now ..rectal and bladder cancer r real bad and if radiistion can make it easier to get then u know what I will wank it out and hope fir the best ..I have a week to figure this out ..they have told me in  Young men they like to yank it due to the long term side effects of radiation....lol....I thought young meaning 40 or 50 ....no it’s me I’m 57 they consider this young in 10 years I will only be 67 I don’t want another 10 years of wearing a bag always ..I guess they don’t worry about long term when the patient is 65 or so ... anyway where can I find s reput source for these stats of long term side effects thanks 

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Comments

  • MK1965
    MK1965 Member Posts: 231 Member
    QOL

    in my opinion, decision would be based on QoL issues:  quality vs longevity. I am risk taker but with prostate Ca I did not have chance to excercise it. Followed wrong advice which I deeply regret.

    My focus is QoL. What is the use of 25-30 years of miserable life when 5-10 would be sufficient to experience all what I want

    Still, 18+ months post surgery, I wish I did not have one. I do not see anything that I am better of with having surgery done.

    MK

  • RobLee
    RobLee Member Posts: 269 Member
    Surgery vs radiation

    Steve, I think you were headed in the right direction initiallly. Surgery and radiation both can have lasting side effects, some worse than others. Your comment about "young" men having many decades ahead of them and there being a greater chance of radiation damage appearing seems to be valid... or at least it's one we hear a lot. What I've observed is that radiation is often chosen by guys who 1) are afraid of surgery in general, 2) have other health problems that might preclude surgery, or 3) are afraid of losing sexual functioning.

    I've spoken with guys who cited each of these specifically... so I hear the same things a lot.  I suppose it comes down to what scares you the most. Surgery didn't scare me. I have had radiation, and I am living with side effects from both.  I don't believe there is a "wrong" choice here.  The worst thing you can do is to be so scared that you just freeze up and don't do anything.

  • Clevelandguy
    Clevelandguy Member Posts: 767 Member
    Radiation vs Surgery

    Hi Steve,

    First of all both surgery & radation have side effects, but they are different.  From what I know I agree with a lot of your radation concerns but surgery can have sometimes long lasting side effects also.  Surgery did not go well for MK but I feel it went OK for me.  Had surgery back in 2014 and my PSA is still undetectable.  I have no ED and I still use a light pad liner in my underwear to catch the occasional drip but I am OK with.  I took the approach that if surgery did not get all the cancer then I would go with radiation as a second attack.  But if the surgery does work then no side effects from radiation to worry about ever.  It your choice based on the various sources you can study as to choose radation or surgery.  Choosing a good facility and great doctors improves you chance of having a better outcome via surgery or radation.  The American Cancer Society has lots of good info on the side effects of both surgery & radation. Also the manufactures web site for thing like Cyberknife also have side effect info.   Good luck in your choice.

    Dave 3+4

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    edited May 2018 #5
    FWIW

    Yes, surgery and radiation can both have side effects but, base don what I've read and heard here, the "side effects" from surgery are more immediate and can be far more devastating than anything that might happen years after treatment w/radiation. 

    Most of the information that I've read concerning the side effects of radiation were published years ago when the delivery of radiation was far less accurate and precise than it is now.  The reason this is important is that the more accurate and precise the delivery of radiation the fewer side effects that are likely to occur. 

    This is especially true w/SBRT which can deliver radiation to the sub-mm level, which all but eliminates the possibility of collateral tissue damage during treatment which might result in damage to the rectum, bladder and/or urethra (which are the most common radiation side effects).

    Cyberknife, which I was treated with, is one such method of radiation delivery which has been in common use for over 10 years now.  I was treated 7 years ago w/o any side effects (short or long) and 5 yr studies have not reported very high treatment success and few effects.

    See for example: https://www.itnonline.com/content/cyberknife-system-provides-long-term-disease-control-prostate-cancer-patients

     

     

     

     

  • ASAdvocate
    ASAdvocate Member Posts: 180 Member
    The only types of radiation

    The only types of radiation that should be considered are SBRT, HDR-BT and PBT (protons). Everything else is becoming archaic. I am a member of six internet forums and an in-person PCa support group. Just off the top of my head, it seems that 80-90 percent of the treatment complaints that are past one month, involve surgery. Do we have 30 year studies on those three types of radiation? No, of course not, they only have maybe 10 years. But, those tecnologies are amazing focused to avoid healthy areas, and there are various shielding methods available, that I would not hesitate to have any of them if I ever need to leave AS.

  • Clevelandguy
    Clevelandguy Member Posts: 767 Member
    Radiation problems?

    Just an added note, Swing is partially correct but there are a lot of people who post here that have had problems after radiation treaments and not just ten years ago.  Both surgery & radiation will give you side effects, some recoverable some not.  Just make sure you study wisely and pick the treament that suits your life & conditon with your cancer.  If you want I can post several recent posts of people with problems after radation treaments.  Neither surgery or radation is a walk in the park and both have collateral damage that they leave you with.

    Dave 3+4

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    .

    ssw

    "Yes, surgery and radiation can both have side effects but, base don what I've read and heard here, the "side effects" from surgery are more immediate and can be far more devastating than anything that might happen years after treatment w/radiation. "

    During the last 10 years I have not only posted here regularly, but I have also attended various local support groups on a regular basis where I listened to lecturers about the various treatments. I have also read extensively on this subject.  The information that I have come across has brought me to the conclude the same as you. You are right on target.

    Additionally at these support groups , time and time again I have come across men who were despondent, since they suffered from the side effects resulting from surgery. This was not true of radiation, especially SBRT, the latest and most precise. I have read studies about men who have had SBRT, and the side effects that were found were minimal.

  • Clevelandguy
    Clevelandguy Member Posts: 767 Member

    .

    ssw

    "Yes, surgery and radiation can both have side effects but, base don what I've read and heard here, the "side effects" from surgery are more immediate and can be far more devastating than anything that might happen years after treatment w/radiation. "

    During the last 10 years I have not only posted here regularly, but I have also attended various local support groups on a regular basis where I listened to lecturers about the various treatments. I have also read extensively on this subject.  The information that I have come across has brought me to the conclude the same as you. You are right on target.

    Additionally at these support groups , time and time again I have come across men who were despondent, since they suffered from the side effects resulting from surgery. This was not true of radiation, especially SBRT, the latest and most precise. I have read studies about men who have had SBRT, and the side effects that were found were minimal.

    Can be?

    Yes you are right H&O, can be is a very powerful word.  One guy on this forum(can't remember his name) was back up with no ED or leakage after like 6-8 weeks, Vasco had no leakage after they took out his cath, remarkable.  Some other people have had life long severe ED & urine leakage. Surgery effects are immediate but usually get better with time where radation is the opposite with some side efects showing up years later.  The side effects depend on the amount of cancer, location of the cancer, surgeon & oncologist experience and hospital equipment for both surgery & radiation.  That's why people need to study both radation & surgery along with the possible side effects pick the best doctors and facilities and make their own personal choice.  I have listed below a few of the people that post on this forum and their problems with radiation treaments.  I am sure that you can find just as many that have had bad outcomes from surgery also.  Like I said both forms of treaments have side effects, sometimes very serious, sometimes not.  Study & choose wisely.............................

    Rob Lee Jan. 2018: I completed eight weeks of radiation last October and the side effects are just now finally wearing off, specifically the proctitis that happens with some men. Diarrhea started my second week and by the end of Tx I was bleeding rectally. I don't know exactly what you mean by abdominal pain, but for many weeks I would go all day feeling like I had to defecate, and often would several times a day. Often there was a lot of gas too.

    Max Jan. 2018:  I asked him about a friend who had received radiation years ago and later had to periodically have his colon cauterized to stop bleeding.  The surgeon told me that this was extremely common, he had done many such cauterizations on men who had received PCa radiation over the years.  

    Vasco Jan. 2018: Radiation treatments for PCa typically create scar tissue in the urethra and bladder. In most of the cases these areas burst into wounds causing bleeding till it repairs by itself. There is no fixed period on occurrences and many guys experience bleeding many years after treatment. Doctors call it RT late side effects

    Bluepac6 Feb 2018:  The radiation I 2011 had damaged my urethra and bladder beyond repair and my only choices were to wear a catheter bag out my penis the rest of my life or have bad part of urethra removed and my bladder removed.

    Joesephg Feb 2018:  My condition was diagnosed as hematuria, and my Urologist advised that this is not an uncommon occurrence for people who have received radiation therapy near the bladder. 

    Las711 March 2018:  Just had 39 tretments Prostate Radiation 4 months ago.. All went well PSA now at .08.. but I now have Radiation Proctitis.. Lower bowel area.. Dealing with it using Surcaltate enemas.. 

     

    Dave 3+4

  • ASAdvocate
    ASAdvocate Member Posts: 180 Member

    Can be?

    Yes you are right H&O, can be is a very powerful word.  One guy on this forum(can't remember his name) was back up with no ED or leakage after like 6-8 weeks, Vasco had no leakage after they took out his cath, remarkable.  Some other people have had life long severe ED & urine leakage. Surgery effects are immediate but usually get better with time where radation is the opposite with some side efects showing up years later.  The side effects depend on the amount of cancer, location of the cancer, surgeon & oncologist experience and hospital equipment for both surgery & radiation.  That's why people need to study both radation & surgery along with the possible side effects pick the best doctors and facilities and make their own personal choice.  I have listed below a few of the people that post on this forum and their problems with radiation treaments.  I am sure that you can find just as many that have had bad outcomes from surgery also.  Like I said both forms of treaments have side effects, sometimes very serious, sometimes not.  Study & choose wisely.............................

    Rob Lee Jan. 2018: I completed eight weeks of radiation last October and the side effects are just now finally wearing off, specifically the proctitis that happens with some men. Diarrhea started my second week and by the end of Tx I was bleeding rectally. I don't know exactly what you mean by abdominal pain, but for many weeks I would go all day feeling like I had to defecate, and often would several times a day. Often there was a lot of gas too.

    Max Jan. 2018:  I asked him about a friend who had received radiation years ago and later had to periodically have his colon cauterized to stop bleeding.  The surgeon told me that this was extremely common, he had done many such cauterizations on men who had received PCa radiation over the years.  

    Vasco Jan. 2018: Radiation treatments for PCa typically create scar tissue in the urethra and bladder. In most of the cases these areas burst into wounds causing bleeding till it repairs by itself. There is no fixed period on occurrences and many guys experience bleeding many years after treatment. Doctors call it RT late side effects

    Bluepac6 Feb 2018:  The radiation I 2011 had damaged my urethra and bladder beyond repair and my only choices were to wear a catheter bag out my penis the rest of my life or have bad part of urethra removed and my bladder removed.

    Joesephg Feb 2018:  My condition was diagnosed as hematuria, and my Urologist advised that this is not an uncommon occurrence for people who have received radiation therapy near the bladder. 

    Las711 March 2018:  Just had 39 tretments Prostate Radiation 4 months ago.. All went well PSA now at .08.. but I now have Radiation Proctitis.. Lower bowel area.. Dealing with it using Surcaltate enemas.. 

     

    Dave 3+4

    Dave, one thing I've never

    Dave, one thing I've never heard, after reading and hearing thousands of post-treatment complaints, is someone who had radiation as a primary treatment, wishing that they had had surgery instead. 

  • Clevelandguy
    Clevelandguy Member Posts: 767 Member
    Maybe

    Maybe a few of the people above that I quoted might wish that, if they are online they can chime in.  But its not about that or which is the best choice cause there are none.  Radiation and Surgery both have side effects, short term & long term.  Understand them and choose wisley.  If there was a treatment that had no side effects we all would have taken it, but there is none.

    Dave 3+4

  • Steve1961
    Steve1961 Member Posts: 301
    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 

  • Steve1961
    Steve1961 Member Posts: 301
    Just a thought

    I know everyone here means well and all info is appreciated veryyyy much...but it seems like this place is kinda like turning on the local news station...it seems like 95% bad news and only 5% good news.....I know most people come here looking for help with something that went wrong ..I get it ...butttt there has to be tons of good results out there ...we just don’t hear about them here ...but we will hear some soon  and it will be from me ...thanks everyone 

  • Clevelandguy
    Clevelandguy Member Posts: 767 Member
    Good results sure

    Hi Steve,

    Sorry to sound doom & gloom but yes there are plenty of good results with radiation & surgery.  Just have to be ready for both sides of the story.  Just like when a women gets pregnant they want to know how hard labor is and how much it hurts & not about how nice it is to hug your newborn.  Kinda of human nature to want to know all the sides, the good, bad, and ugly.  I think there is a movie title in there somewhere?

    Dave 3+4

  • ASAdvocate
    ASAdvocate Member Posts: 180 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 

    SpaceOAR has been around for

    SpaceOAR has been around for a year or two, and is used to shield the rectum from radiation. Many radiation centers have started using it. It's like that expanding foam spray that's used to fill small cracks in houses, except that it harmlessly biodegrades.  I have read that it has not proved a difference in SBRT, probably because the accuracy of that treatment does not need insulation.

  • Old Salt
    Old Salt Member Posts: 934 Member

    SpaceOAR has been around for

    SpaceOAR has been around for a year or two, and is used to shield the rectum from radiation. Many radiation centers have started using it. It's like that expanding foam spray that's used to fill small cracks in houses, except that it harmlessly biodegrades.  I have read that it has not proved a difference in SBRT, probably because the accuracy of that treatment does not need insulation.

    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.

  • Steve1961
    Steve1961 Member Posts: 301
    Wow

    wow just when I had my mind made up ...surgury is kinda sounding better I mean really what long term side affects from surgury are there...ED who cares incontinance  my dr said I would most likely regain all of that ...what else is their to surgury ...I mean man with radiation u can hsve blood in urine ,in stools ,uretha damage ,rectal  damage ..may not be worth it ..really. I’m flipping s coin ..to many what ifs ..

  • Old Salt
    Old Salt Member Posts: 934 Member
    Steve1961 said:

    Just a thought

    I know everyone here means well and all info is appreciated veryyyy much...but it seems like this place is kinda like turning on the local news station...it seems like 95% bad news and only 5% good news.....I know most people come here looking for help with something that went wrong ..I get it ...butttt there has to be tons of good results out there ...we just don’t hear about them here ...but we will hear some soon  and it will be from me ...thanks everyone 

    Not a good thought

    The fact that so many are responding means there got to be good news. 

    It's hard to contribute if one is six ft under...

  • MK1965
    MK1965 Member Posts: 231 Member

    .

    ssw

    "Yes, surgery and radiation can both have side effects but, base don what I've read and heard here, the "side effects" from surgery are more immediate and can be far more devastating than anything that might happen years after treatment w/radiation. "

    During the last 10 years I have not only posted here regularly, but I have also attended various local support groups on a regular basis where I listened to lecturers about the various treatments. I have also read extensively on this subject.  The information that I have come across has brought me to the conclude the same as you. You are right on target.

    Additionally at these support groups , time and time again I have come across men who were despondent, since they suffered from the side effects resulting from surgery. This was not true of radiation, especially SBRT, the latest and most precise. I have read studies about men who have had SBRT, and the side effects that were found were minimal.

    I missed good discussion

    ohh men,

    i missed this good discussion and all excitement

    Had surgery, experienced lots of bad in my 18+ months post surgery. My QoL is on downhill ever since surgery.

    I wish I never had surgery neither any other form of treatment. I was incidentally diagnosed so it was just beginning and I could easily enjoy another 10 years of good life before treatment would be needed even with my 4+3 after biopsy.

    In the sixties, I would care less about ED, not same way as it is in my early fifties.

    I totaly agree with H&O. Surgery SE are very harsh and hardly recoverable. 

    Radiation would be my choice of treatment because it would leave me with better QoL in all regards.

    MK

  • Grinder
    Grinder Member Posts: 487 Member
    Again, variables.

    Question... how many Davinci RPs were performed versus how many SBRTs? You can compare the greater number of incidence of side effects in Davinci RP ONLY if there is an equal number being performed. Judging from stats I have seen there are FAR more Davinci RPs being performed.

    I quoted an AARP study that gave percentages instead of raw numbers of side effects.. AND most importantly, it distinguished between all other surgery types and nerve sparing Davinci surgery...

    Prostate-cancer treatment causes ED because the nerves involved in erection border the gland. Surgery often cuts these; radiation frequently damages them.

    A special surgical approach called nerve-sparing prostatectomy can push your ED risk below that of radiation. Studies report "functional" erections in 60 to 80 percent of men who have nerve-sparing surgery. 

    Just as Cyberknife is acclaimed to improve targeting, so does nerve sparing improve recovery odds in RP. And referring to older cases of radiation treatments having more reported side effects, so does RPs various older procedures... Open RP and laparoscopic non-sparing RP.

    Quoting Cyberknife stats and comparing them to ALL types of RP, and not taking percentages into account is misleading.

    We keep having this conversation over and over again. There are many complaints of side effects from all types of RP, but there are many many more successful NERVE SPARING Davinci RPs that do not get reported than those with disastrous side effects.

    Steve... you would be a fool to listen to me for a recommendation either way. You need to gather as much real information, consult with your doctors, and seek out the best and most experienced professionals available.

    I would rather have an experienced best available radiation oncologist perform SBRT, rather than a newbie inexperienced surgeon cutting his teeth during my RP.

    Likewise, I would rather have an experienced surgeon with an unassailable record of minimal side effects than a rad onc experimenting with SBRT and I'm his training pigeon.

  • ASAdvocate
    ASAdvocate Member Posts: 180 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.