IMRT radiation long term effects

gkoper
gkoper Member Posts: 173
edited March 2014 in Prostate Cancer #1
I had Davinci surgery a year ago & finished 37 IMRT treatments in late Dec. During the treatments & up till the present, I've experienced little in the way of side effects. But I have heard it could take up to 2 years before side effects kick in.

Has anyone out there experienced long term IMRT side effects.

Thanks for any replys,
George
«1

Comments

  • mrspjd
    mrspjd Member Posts: 694 Member
    more questions than answers for you
    george, can't answer your question as we are still in the "decision" mode for first line treatment (tx), however, curious to learn more on your stats & if they might be similar to pjd's. guessing you must have posted them prevously, but wondering if you'd mind answering some questions as they might be helpful in our decision process. What was your clincical staging prior to the surgery, as well as your pre and post op gleason, pre and post op psa? what did your post surgery path report say regarding your margins, and did it indicate your post op pathology stage? how long after the surgery did you start radiation? if you had clear margins, did you do the IMRT to be proactive or because your psa went up? did you take hormones prior to or with radiation and if so, what hormones and hormone scheduling were you on? what was your psa after radiation and now? if you'd rather not post the info here, let me know and we can email via the discussion board link. thanks.
    mrs pjd
  • RRMCJIM
    RRMCJIM Member Posts: 149
    mrspjd said:

    more questions than answers for you
    george, can't answer your question as we are still in the "decision" mode for first line treatment (tx), however, curious to learn more on your stats & if they might be similar to pjd's. guessing you must have posted them prevously, but wondering if you'd mind answering some questions as they might be helpful in our decision process. What was your clincical staging prior to the surgery, as well as your pre and post op gleason, pre and post op psa? what did your post surgery path report say regarding your margins, and did it indicate your post op pathology stage? how long after the surgery did you start radiation? if you had clear margins, did you do the IMRT to be proactive or because your psa went up? did you take hormones prior to or with radiation and if so, what hormones and hormone scheduling were you on? what was your psa after radiation and now? if you'd rather not post the info here, let me know and we can email via the discussion board link. thanks.
    mrs pjd

    good luck gkoper
    Hopefully you will continue without any side effects....this cancer seems to leave enough **** in our lives....Mrspjd....I also went thru divinci surgery, the day after George....wow one year this month...my PSA went from 2.8 to 3.85 in a year....no nodules detected with DRE at time of physical...had some trouble with nighttime urination.. Dr had a biopsy done...1 in 12 positive....Gleason 3+3=6.. 15% involvement T1c.. no invasion detected ... post surgery..still 3+3=6... margins clear, capsule contained.. in my case Doc said the big "C " stood for cure....but still tested every 3 months....regrets...sometimes....do it again....Absolutely...I know these facts to be true, because I had it removed and checked, lymph nodes clear....side effects...when I compare it with spending the rest of my life cancer free, with my wife and kids..side effects are nothing We can't deal with..
    Jim ( Big Ugly Biker )
  • gkoper
    gkoper Member Posts: 173
    mrspjd said:

    more questions than answers for you
    george, can't answer your question as we are still in the "decision" mode for first line treatment (tx), however, curious to learn more on your stats & if they might be similar to pjd's. guessing you must have posted them prevously, but wondering if you'd mind answering some questions as they might be helpful in our decision process. What was your clincical staging prior to the surgery, as well as your pre and post op gleason, pre and post op psa? what did your post surgery path report say regarding your margins, and did it indicate your post op pathology stage? how long after the surgery did you start radiation? if you had clear margins, did you do the IMRT to be proactive or because your psa went up? did you take hormones prior to or with radiation and if so, what hormones and hormone scheduling were you on? what was your psa after radiation and now? if you'd rather not post the info here, let me know and we can email via the discussion board link. thanks.
    mrs pjd

    Questions & Answers for mrs pjd
    I don't have the comprehensive path report of some at this site, but I'll try to answer your ?s

    I was clinical stage T1, PSA 5.7, Gleason score 7. 4 of 12 samples were 38% affected.
    Post op; gleason 7, psa .3 at 6 weeks, clear margins & no extraprostatic extensions.

    Davinci was on May 21, 2010, PSA went from .3 in late June to .7 in Oct. With that doubling, I started IMRT in Late Oct. finishing just before Christmas. No Hormones.

    1st PSA after IMRT: 0.3, 2nd: 0.1. Was told it takes up to 6 months for all cancer sells to die off after IMRT.

    Hope this helps.
    George
  • mrspjd
    mrspjd Member Posts: 694 Member
    gkoper said:

    Questions & Answers for mrs pjd
    I don't have the comprehensive path report of some at this site, but I'll try to answer your ?s

    I was clinical stage T1, PSA 5.7, Gleason score 7. 4 of 12 samples were 38% affected.
    Post op; gleason 7, psa .3 at 6 weeks, clear margins & no extraprostatic extensions.

    Davinci was on May 21, 2010, PSA went from .3 in late June to .7 in Oct. With that doubling, I started IMRT in Late Oct. finishing just before Christmas. No Hormones.

    1st PSA after IMRT: 0.3, 2nd: 0.1. Was told it takes up to 6 months for all cancer sells to die off after IMRT.

    Hope this helps.
    George

    thanks
    thanks for the info, george. great news that your psa is declining and the RT side effects have been minimal! please keep us posted on your journey after RP & RT.
    Best,
    mrs pjd
  • BRONX52
    BRONX52 Member Posts: 156
    mrspjd said:

    more questions than answers for you
    george, can't answer your question as we are still in the "decision" mode for first line treatment (tx), however, curious to learn more on your stats & if they might be similar to pjd's. guessing you must have posted them prevously, but wondering if you'd mind answering some questions as they might be helpful in our decision process. What was your clincical staging prior to the surgery, as well as your pre and post op gleason, pre and post op psa? what did your post surgery path report say regarding your margins, and did it indicate your post op pathology stage? how long after the surgery did you start radiation? if you had clear margins, did you do the IMRT to be proactive or because your psa went up? did you take hormones prior to or with radiation and if so, what hormones and hormone scheduling were you on? what was your psa after radiation and now? if you'd rather not post the info here, let me know and we can email via the discussion board link. thanks.
    mrs pjd

    IMRT
    I HAD DAVINCI FEB-2010. WAS CLINICALLY T1C BEFORE SURGERY BUT AFTER SURGERY THE PATHOLOGIC STAGE WAS T3A. GLEASON WAS (3+4) BOTH BEFORE AND AFTER SURGERY. I HAD 1 POSITIVE MARGIN AND EXTRACAPSULAR EXTENSION. MY PSA PRIOR TO SURGERY WAS 5.1. SIX WEEKS AFTER IT WAS 0-NON DETECTABLE. HOWEVER, SINCE I HAD THE 1 POSITIVE MARGIN I WAS SCHEDULED FOR IMRT. THIS STARTED IN APRIL ABOUT 2 MONTHS AFTER THE SURGERY. CURRENTLY HALF WAY THROUGH THE TREATMENTS AND HAVE HAD NO SIDE EFFECTS! I WILL LET YOU KNOW HOW IT IS WHEN I'M DONE. HOPE THIS HELPS
  • gkoper
    gkoper Member Posts: 173
    BRONX52 said:

    IMRT
    I HAD DAVINCI FEB-2010. WAS CLINICALLY T1C BEFORE SURGERY BUT AFTER SURGERY THE PATHOLOGIC STAGE WAS T3A. GLEASON WAS (3+4) BOTH BEFORE AND AFTER SURGERY. I HAD 1 POSITIVE MARGIN AND EXTRACAPSULAR EXTENSION. MY PSA PRIOR TO SURGERY WAS 5.1. SIX WEEKS AFTER IT WAS 0-NON DETECTABLE. HOWEVER, SINCE I HAD THE 1 POSITIVE MARGIN I WAS SCHEDULED FOR IMRT. THIS STARTED IN APRIL ABOUT 2 MONTHS AFTER THE SURGERY. CURRENTLY HALF WAY THROUGH THE TREATMENTS AND HAVE HAD NO SIDE EFFECTS! I WILL LET YOU KNOW HOW IT IS WHEN I'M DONE. HOPE THIS HELPS

    Bronx52
    Sounds like your zapping it all early. I had minor side effects during IMRT: increase in urgency& frequency of urination. Really was much easier then expected. I am only 5 months past, don't know the long term effects. I'll seize the day while I can.

    Best of luck on your treatments & keep us posted;-)

    George
  • Kentr
    Kentr Member Posts: 111
    gkoper said:

    Bronx52
    Sounds like your zapping it all early. I had minor side effects during IMRT: increase in urgency& frequency of urination. Really was much easier then expected. I am only 5 months past, don't know the long term effects. I'll seize the day while I can.

    Best of luck on your treatments & keep us posted;-)

    George

    Hey George
    I didn't have IMRT but I did go the radiation route via brachytherapy. After two years I started experiencing a recurrence of side effects - urgency and frequency. My oncologist said it's not common but it does happen on occasion in or around year number two. I started taking terazosin again (2mg per day) in February of this year and everything has settled down again. I will begin tapering off the med in another month and see what happens.

    For what it's worth.

    Kent
  • 2ndBase
    2ndBase Member Posts: 220
    Side effects
    I am over 6 six out from 40 such treatments and have no side effects of any concern. The radiation killed all the cancer in my prostate. Bad news is it had already spread and now there is no cure. I choose to beat it without any further treatment therfore I will have no more side effects from now on.
  • gkoper
    gkoper Member Posts: 173
    2ndBase said:

    Side effects
    I am over 6 six out from 40 such treatments and have no side effects of any concern. The radiation killed all the cancer in my prostate. Bad news is it had already spread and now there is no cure. I choose to beat it without any further treatment therfore I will have no more side effects from now on.

    2nd base
    Forgive me if I posted this before......I'm getting old. BUT...
    Cancer is SO limited.....

    It cannot cripple love
    It cannot kill friendship
    It cannot shutout memories
    It cannot silence courage
    It cannot invade the soul
    It cannot reduce eternal life
    It cannot quench the spirit
    It cannot lessen the power of the resurrection.

    Live large 2nd base.

    George
  • BRONX52
    BRONX52 Member Posts: 156
    gkoper said:

    2nd base
    Forgive me if I posted this before......I'm getting old. BUT...
    Cancer is SO limited.....

    It cannot cripple love
    It cannot kill friendship
    It cannot shutout memories
    It cannot silence courage
    It cannot invade the soul
    It cannot reduce eternal life
    It cannot quench the spirit
    It cannot lessen the power of the resurrection.

    Live large 2nd base.

    George

    GEORGE
    FINISHED WITH THE RADIATION!!!---38 TREATMENTS. LIKE YOU, NO REAL SIDE EFFECTS OTHER THAN FREQUENCY AND URGENCY. I GUESS WE HAVE TO WAIT A FEW YEARS TO SEE IF WE GET ANY OF THOSE DELAYED SIDE EFFECTS. I SPOKE TO MY RADIATION ONCOLOGIST AND HE SAID THAT HE HAS SEEN SERIOUS DELAYED SIDE EFFECTS IN ONLY 2% OF PATIENTS HE HAS TREATED IN 25 YEARS. HAD A ZERO PSA GOING INTO RADIATION AND WILL BE TAKING ANOTHER ONE IN AUGUST. LETS HOPE IT STAYS THAT WAY.---DAN
  • lewvino
    lewvino Member Posts: 1,010
    gkoper said:

    2nd base
    Forgive me if I posted this before......I'm getting old. BUT...
    Cancer is SO limited.....

    It cannot cripple love
    It cannot kill friendship
    It cannot shutout memories
    It cannot silence courage
    It cannot invade the soul
    It cannot reduce eternal life
    It cannot quench the spirit
    It cannot lessen the power of the resurrection.

    Live large 2nd base.

    George

    Very Nice, I like that. Got
    Very Nice, I like that. Got an email today from CSN stating that June 6th is National Cancer survivors day! Three cheers for all of us survivors!

    larry
  • mssa58
    mssa58 Member Posts: 21
    mrspjd said:

    more questions than answers for you
    george, can't answer your question as we are still in the "decision" mode for first line treatment (tx), however, curious to learn more on your stats & if they might be similar to pjd's. guessing you must have posted them prevously, but wondering if you'd mind answering some questions as they might be helpful in our decision process. What was your clincical staging prior to the surgery, as well as your pre and post op gleason, pre and post op psa? what did your post surgery path report say regarding your margins, and did it indicate your post op pathology stage? how long after the surgery did you start radiation? if you had clear margins, did you do the IMRT to be proactive or because your psa went up? did you take hormones prior to or with radiation and if so, what hormones and hormone scheduling were you on? what was your psa after radiation and now? if you'd rather not post the info here, let me know and we can email via the discussion board link. thanks.
    mrs pjd

    Radiation side effects
    Hi, I had a Gleason score of 8 prior to my surgery. After surgery they bumped it up to a 9 with a T4 rating since the cancer had invaded the bladder neck. Two months after surgery I had two PSA test with the first one being .013. A week later it had jumped to 0.52 and at that time I was scheduled to meet with a Radiation Oncologist at the VA hospital in Milwaukee, WI. After discussing it with them, plus reading all the research my wife (an RN) had done, we decided I would take the female hormone shots plus radiation. I am now a little better than half way with both my hormone shots and radiation, 22 out of 37 done, and I am suffering from several side effects. The hormone shots have caused me to suffer from hot flashes ranging in mild to somewhat severe. The radiation makes me so tired that most of my time is spent sitting in a chair to tired to do anything. I am also back to wearing pads due to a problem with incontinence along with bowel problems. One good thing is that I temporarily can not eat fresh veggies. At least there is some good news. They use a big needle for the hormone shot but they deaden the area in your stomach first so you don't feel anything. I have felt sick since I got the first of two hormone shots back at the beggining of March. It wears on you a bit after a while and I think part of my depression is due to not feeling well because of the radiation and hormone. They say that some people have no side effects from treatment and I am glad for them. If I had known that I would suffer like this I would have had to seriously consider forgoing treatment and taking my chances with the cancer.

    Hopefully you will have better success with it than I do. Good luck.

    Terry
  • BRONX52
    BRONX52 Member Posts: 156
    lewvino said:

    Very Nice, I like that. Got
    Very Nice, I like that. Got an email today from CSN stating that June 6th is National Cancer survivors day! Three cheers for all of us survivors!

    larry

    LEWINO
    I SECOND THAT !!!! IT'S GREAT TO BE A SURVIVIOR AND BEING ABLE TO SHARE AND COMMUNICATE WITH EACH OTHER HAS BEEN MOST HELPFUL. GOOD LUCK TO ALL AS YOU CONTINUE TO BATTLE THIS BEAST !! WE WON'T LET IT DEFEAT US !!!
  • tdorman
    tdorman Member Posts: 21
    George
    I had IMRT radiation for recurrence of prostate cancer in 2003. At that time only 1 place in Tampa offered IMRT. I had 43 hits. No side effects and PSAs still zero. Had no effect on erections and incontinence.
  • gkoper
    gkoper Member Posts: 173
    tdorman said:

    George
    I had IMRT radiation for recurrence of prostate cancer in 2003. At that time only 1 place in Tampa offered IMRT. I had 43 hits. No side effects and PSAs still zero. Had no effect on erections and incontinence.

    tdorman
    Thanks for the reply........thats encouraging news.

    Hope your zero's continue.
    George
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    tdorman said:

    George
    I had IMRT radiation for recurrence of prostate cancer in 2003. At that time only 1 place in Tampa offered IMRT. I had 43 hits. No side effects and PSAs still zero. Had no effect on erections and incontinence.

    Tdorman
    Wondered what your stats were before you had your IMRT?

    Randy in Indy
  • tdorman
    tdorman Member Posts: 21

    Tdorman
    Wondered what your stats were before you had your IMRT?

    Randy in Indy

    Randy
    Can't remember exactly. I had the surgery in 1996 and had zero psa readings until late 2002. My psa was still very low but had moved up over one year to maybe .4. My uro suggested I get radiation. The thing I did not know about radition until recently it it never stops working. I recently had a minor bladder issue that came from the radiation I had seven years ago. I learned that some of the treatments for incontinence are not as effective or long lasting if you have had radiation. The radiation will deterate the rubber in the AUS implant. Collagen and other injections are not as effective if you have had radiation. Radiation is nasty but it works and keeps on working.
  • tdorman
    tdorman Member Posts: 21

    Tdorman
    Wondered what your stats were before you had your IMRT?

    Randy in Indy

    Randy
    Can't remember exactly. I had the surgery in 1996 and had zero psa readings until late 2002. My psa was still very low but had moved up over one year to maybe .4. My uro suggested I get radiation. The thing I did not know about radition until recently it it never stops working. I recently had a minor bladder issue that came from the radiation I had seven years ago. I learned that some of the treatments for incontinence are not as effective or long lasting if you have had radiation. The radiation will deterate the rubber in the AUS implant. Collagen and other injections are not as effective if you have had radiation. Radiation is nasty but it works and keeps on working.
  • tdorman
    tdorman Member Posts: 21

    Tdorman
    Wondered what your stats were before you had your IMRT?

    Randy in Indy

    Randy
    Can't remember exactly. I had the surgery in 1996 and had zero psa readings until late 2002. My psa was still very low but had moved up over one year to maybe .4. My uro suggested I get radiation. The thing I did not know about radition until recently it it never stops working. I recently had a minor bladder issue that came from the radiation I had seven years ago. I learned that some of the treatments for incontinence are not as effective or long lasting if you have had radiation. The radiation will deterate the rubber in the AUS implant. Collagen and other injections are not as effective if you have had radiation. Radiation is nasty but it works and keeps on working.
  • Brad1
    Brad1 Member Posts: 4
    tdorman said:

    George
    I had IMRT radiation for recurrence of prostate cancer in 2003. At that time only 1 place in Tampa offered IMRT. I had 43 hits. No side effects and PSAs still zero. Had no effect on erections and incontinence.

    George
    I had 43 treatments and no side effects for first six months. ED has set in gradualy but Cialis and Viagra used to take care of it. Now a Year later and the little blue pill is has quit me. Doctor said my testorone is low but will not treat me, for he says it would be like pouring gas on a fire if I have any cancer cells still living. I was a gleason 7 (4+3) with 5 of 14 cores showing positive. PSA was 5.8 before radiation, .95 after six months and curently waiting 1 year results. Can anyone help me. I am glad to be here, but would like my love life back.