Radiation after surgery & Prostascint

ezra99
ezra99 Member Posts: 18
edited March 2014 in Prostate Cancer #1
Looking for any feedback from people who have done radiation after surgery. Briefly, my surgery was 4 months ago. PSA before surgery was 6.8. PSA 6 weeks after - .33 and 15 weeks after .38. Gleason was 4+3=7. Extraprostatic extension. Margins - "uninvolved". Stage pT3b. I've struggled with incontinence since surgery but if only have one caffiene drink in morning and don't drink more the 8 ounces of fluids every 2-3 hours I can usually get by with 2 or 3 pads a day and almost always dry overnight.

My question/concern - Is radiation worth the further risk to continence when presence of cancer in my pelvis is just a "best guess"? The urologist says 80% chance that it's in the prostatic bed. Since the start of this last fall I've always fallen in the "wrong" precentage of everything. They said about 50% chance it was cancer prior to my biopsy - I got the wrong 50%. Said 62% chance that surgery would "get it all" and I end up in the 38% group. Now the "bad group" is down to 20% but I would much rather have like a 99.9% chance of getting it with radiation. When I shared my concern about the side effects he said the alternative is hormone therapy but he recommends I do radiation. I see the radiation oncologist next week. He did advise to talk with him about doing a Prostascint prior. Said normally doesn't recommend them but in my case it may be helpful if I'm hesitant about radiation. Has anyone who has done radiation after surgery done the Prostascint prior to assist in making the decision? Any feed back prior to meeting with him would be appreciated. Is there any questions I should be asking him other then the discussion I plan to have about possible side effects and effectiveness of radiation. I really don't like the idea of zapping me somewhere like this when its a gamble as to whether the cancer is even in the "zap zone". I'd go with a Prostascint if it would likely give me better information on where everything I don't want in my body is hanging out but from what I read about it I'm not sure that is the case with this test. Wondering if anyone here might have some more positive thoughts about Prostascint.

Thanks

Comments

  • Trew
    Trew Member Posts: 932 Member
    The hormone therapy is no
    The hormone therapy is no fun, that's for sure.

    You are like me- you keep falling on the wrong side of the numbers.

    Did you mention positive margins? I didn't notice those words. So why radiation? I was a T4 with bladderneck involvement and have been through surgery, rad and hormone shots.

    I am not a doc and have no idea what your doc is looking at when he suggests rad.

    Did the surgeon spare those all important side nerves? My uro told me yesterday they play an important part in continency after surgery.

    Radiation makes scar tissue which often impacts continency. We have been discussing that issue a lot here lately.
  • bdhilton
    bdhilton Member Posts: 848 Member
    I just comment on another
    I just commented on another side but with negative margins why is your URO suggesting radiation? I would ask. Every study I have read (and I am no doctor) suggest that radiation does not do any good with negative margins as the PCa is more than likely some where else.... Anyway, talk to a few more docs and an oncologist who is a surgeon not a radiologist…

    Best to you
  • BRONX52
    BRONX52 Member Posts: 156
    EZRA99
    I HAD RADIATION AFTER SURGERY AND MY CIRCUMSTANCES WERE SIMILAR TO YOURS. I WAS DIAGNOSED IN DEC-09 AS A T1C, GLEASON 3+4-7, WITH A PSA OF 5.1 AND 2 OF 10 CORES POSITIVE BY NEEDLE BIOPSY. BUT LIKE YOU I WOUND UP ON THE WRONG END OF THE STATISTICS. HAD THE DAVINCI SURGERY FEB-12TH 2010. POST SURGERY PATHOLOGY HAD ME AT STAGE T3A, STILL A GLEASON 7, POSITIVE MARGINS, EXTRAPROSTATIC EXTENSION, PERENEURAL INVASION,PROSTATE 75% INVOLVED IN BOTH LOBES. LUCKILY,(IF YOU CAN SAY THAT ABOUT PC) THERE WAS NO LYMPH NODE OR SEMINAL VESICLE INVOLVEMENT. MY PSA AT 6 WEEKS WAS 0-UNDETECTABLE. HOWEVER, DUE TO THE POSITIVE MARGINS, EXTRAPROSTATIC EXTENSION ETC: RADIATION THERAPY WAS RECOMMENDED. AFTER CONSULTING WITH A FEW MORE DOCTORS I DECIDED ON IMRT. I SHOULD NOTE THAT I WENT TO A PHYSICAL THERAPIST BOTH BEFORE AND AFTER SURGERY TO COMBAT ANY INCONTENANCE ISSUES THAT MIGHT COME UP. EXCEPT FOR A FEW DAYS AFTER THE CATHETER CAME OUT I HAVE'NT HAD AN INCONTINENCE ISSUE. MY DOCTOR WANTED TO BE SURE BECAUSE HE SAID THAT ONCE YOU START THE RADIATION IT "FREEZES" WHEREVER YOU ARE WITH REGARD TO INCONTINENCE.I STARTED THE RADIATION ON APRIL 12TH AND WILL BE FINISHING UP NEXT WEEK AFTER 38 TREATMENTS. NO REAL SIDE EFFECTS EXCEPT FOR URGENCY AND FREQUENCY IN URINATION THAT LASTS ABOUT 4-6 HOURS AFTER THE TREATMENT. AFTER THAT BACK TO NORMAL. HOPE ALL GOES WELL WITH YOU. SEEMS WE HAVE TO MAKE SO MANY TREATMENT DECISIONS---UGH !!
  • mssa58
    mssa58 Member Posts: 21
    Radiation
    I had my prostate, and other tissue, removed back on Oct. 13, 2009. I thought that would be the end of it. They had give me a Gleason score of 9 and a T4 rating since some of the cancer had invaded the bladder neck. When I had a PSA test in Jan. of this year and it came back that I still had cancer it was like someone hit me in the stomach. My first PSA was 0.13. A week later I was back at the dr. office and they did another PSA and this time it came out at 0.52. At this point the dr. made an appointment with the radiation oncologist at the VA hosp. in Milwaukee. After research and talking to them I opted for both hormone therapy and radiation. So far I have not been one of the lucky ones that don't suffer any side effects from the therapy. After they injected me with the hormone they also put me on an oral hormone that really screwed me up. While out with my wife it felt like my throat was closing off and I had trouble breathing. After an ambulance ride to the local emergency room with my blood pressure zooming to 219/115 they were able to get me stabalized. At that point I quit taking the oral hormone and I haven't had that problem since. I do however suffer from extreme weakness most of the time. The hormone also gives me hot flashes and a general feeling of upset stomach. I am now half way thru both my hormone and radiation treatments and I can't wait to finish both of them. Some people I have talked to didn't have any side effects from the radiation. Wish I was one of them. Good luck with your treatment.

    Terry
  • ezra99
    ezra99 Member Posts: 18
    bdhilton said:

    I just comment on another
    I just commented on another side but with negative margins why is your URO suggesting radiation? I would ask. Every study I have read (and I am no doctor) suggest that radiation does not do any good with negative margins as the PCa is more than likely some where else.... Anyway, talk to a few more docs and an oncologist who is a surgeon not a radiologist…

    Best to you

    Question & comment
    Hi,

    Thanks for the information. I have seen two urologist and one medical oncologist. All three want me to talk to radiation oncologist. I did discuss with them the 2007 EORTC 22911 study that says that radiation is only 12% effective for post-surgicals with negative margins. They still claim that I have an 80% chance that cancer is in pelvic area and could respond to radiation. I'm not sure I understand it. Maybe it is because of my stage? I plan to discuss in more detail with radiation oncologist. It was suggested that I may want to have the Prostascint prior to my decision to start radiation. It was recommended that I talk further with rad doctor about that. I'm having difficulty finding more information on Prostascint but have found some. It sounds as if it may be as high as 70-72% accurate at finding cancer cell location. Do you (or anyone else) have any sources or experience with ProstaScint scans? Also, do you know of any other studies that validate EORTC 22911 study?

    Thanks
  • bdhilton
    bdhilton Member Posts: 848 Member
    ezra99 said:

    Question & comment
    Hi,

    Thanks for the information. I have seen two urologist and one medical oncologist. All three want me to talk to radiation oncologist. I did discuss with them the 2007 EORTC 22911 study that says that radiation is only 12% effective for post-surgicals with negative margins. They still claim that I have an 80% chance that cancer is in pelvic area and could respond to radiation. I'm not sure I understand it. Maybe it is because of my stage? I plan to discuss in more detail with radiation oncologist. It was suggested that I may want to have the Prostascint prior to my decision to start radiation. It was recommended that I talk further with rad doctor about that. I'm having difficulty finding more information on Prostascint but have found some. It sounds as if it may be as high as 70-72% accurate at finding cancer cell location. Do you (or anyone else) have any sources or experience with ProstaScint scans? Also, do you know of any other studies that validate EORTC 22911 study?

    Thanks

    ezar99
    Read this study http://www.urosource.com/fileadmin/European_Urology/european_urology/PIIS0302283808003710.pdf

    This is related to what you are referencing... but when I started this journey my Spiritual Adviser made a point to me-“throw statistics out the window” they mean nothing especially when you are on the wrong side of them…Your obviously have to be a reasonable person and make wise decisions but believe in what you do is one of the keys to go through this journey…

    The most appropriate timing of the administration of RT—immediately following surgery in an adjuvant setting or delayed until evidence of (biochemical) recurrence appeared in a salvage setting—is a subject for debate. So there you have it the damned it you do or dammed if you don’t….

    My personal biggest issue with adjunct vs salvage is that more than likely (from my perspective) RT Toxicity is , acute in the long and short term and I would rather have salvage IF my PSA goes up…that is how I feel today….
  • ezra99
    ezra99 Member Posts: 18
    bdhilton said:

    ezar99
    Read this study http://www.urosource.com/fileadmin/European_Urology/european_urology/PIIS0302283808003710.pdf

    This is related to what you are referencing... but when I started this journey my Spiritual Adviser made a point to me-“throw statistics out the window” they mean nothing especially when you are on the wrong side of them…Your obviously have to be a reasonable person and make wise decisions but believe in what you do is one of the keys to go through this journey…

    The most appropriate timing of the administration of RT—immediately following surgery in an adjuvant setting or delayed until evidence of (biochemical) recurrence appeared in a salvage setting—is a subject for debate. So there you have it the damned it you do or dammed if you don’t….

    My personal biggest issue with adjunct vs salvage is that more than likely (from my perspective) RT Toxicity is , acute in the long and short term and I would rather have salvage IF my PSA goes up…that is how I feel today….

    SRT, ADT or Both
    bdhilton,

    I've re-read your response and wonder if you thought I was having adjunctive radiation? I'm actually looking a salvage radiation as my PSA has been detectable since post-op. I did meet with rad oncologist who is sending me to a second med oncologist to discuss ADT with salvage radiation. Lots of percentages thrown at me and lots of "what ifs". My urologist said radiation first and if no response ADT. Rad MD said need to see med oncologist to discuss both at the same time. I meet with med onc MD next week.

    Anyway, my reason in posting this is that it is apparent that you've done a lot of research and wondered if you have any links to helpful references. I'm currently googling like crazy trying to find everything I can on this situation. I've got major concerns about both radiation and ADT. The thought of doing both together is very concerning to me as I think my quality of life is potentially going to drastically change - possibly for the reminder of my life.

    Anyone else that wants to jump in with insight, experiences or references feel free. I would like to get my ducks in a row before next week MD app't.
  • bdhilton
    bdhilton Member Posts: 848 Member
    ezra99 said:

    SRT, ADT or Both
    bdhilton,

    I've re-read your response and wonder if you thought I was having adjunctive radiation? I'm actually looking a salvage radiation as my PSA has been detectable since post-op. I did meet with rad oncologist who is sending me to a second med oncologist to discuss ADT with salvage radiation. Lots of percentages thrown at me and lots of "what ifs". My urologist said radiation first and if no response ADT. Rad MD said need to see med oncologist to discuss both at the same time. I meet with med onc MD next week.

    Anyway, my reason in posting this is that it is apparent that you've done a lot of research and wondered if you have any links to helpful references. I'm currently googling like crazy trying to find everything I can on this situation. I've got major concerns about both radiation and ADT. The thought of doing both together is very concerning to me as I think my quality of life is potentially going to drastically change - possibly for the reminder of my life.

    Anyone else that wants to jump in with insight, experiences or references feel free. I would like to get my ducks in a row before next week MD app't.

    ezra99

    I am keeping my fingers crossed as I am having my second PSA test next week which will be 15 week after surgery…. My PSA on week 4 was non detectable/ZERO….
    I have many secondary issues like you plus SVI….With my oncologist support and agreement I am watching and waiting for a raise in my PSA (if it every happens) and at the present time I would select salvage radiotherapy (adjunct was originally recommended by my oncologist and surgeon)
    So for me I have been looking at studies of Long-Term Rates of Undetectable PSA with Initial Observation and Delayed Salvage Radiotherapy after Radical Prostatectomy since this is what I am doing today (watch/wait)…This whole PCa thing is a bit much sometimes but I always reflect back that every day is a “bonus day”…
    The link below is for a more recent study and findings by Stacy Loeb a, Kimberly A. Roehl b, Davis P. Viprakasit c, William J. Catalona (my surgeon)
    http://www.urosource.com/fileadmin/European_Urology/european_urology/PIIS0302283808003710.pdf

    Lots of stuff out there look for medical schools are renowned hospital studies…I will look for your response to assist further if I can…

    Always good reads at William Catalona’s site

    http://www.drcatalona.com/quest.asp

    Here is another one but make sure you read the actual study of Peterson et al.

    http://prostatecancerinfolink.net/2009/10/01/long-term-follow-up-of-patients-needing-post-rp-salvage-radiation/

    Long-term data comparing 3D CRT for prostate cancer versus the use of IMRT is only now beginning to mature. Few other academic treatment centers have as much experience with 3D CRT and IMRT as Fox Chase….If interested, I would suggest you look into this subject as well….

    http://www.sciencedaily.com/releases/2006/11/061106095008.htm
  • HillBillyNana
    HillBillyNana Member Posts: 107
    ezra99 said:

    Question & comment
    Hi,

    Thanks for the information. I have seen two urologist and one medical oncologist. All three want me to talk to radiation oncologist. I did discuss with them the 2007 EORTC 22911 study that says that radiation is only 12% effective for post-surgicals with negative margins. They still claim that I have an 80% chance that cancer is in pelvic area and could respond to radiation. I'm not sure I understand it. Maybe it is because of my stage? I plan to discuss in more detail with radiation oncologist. It was suggested that I may want to have the Prostascint prior to my decision to start radiation. It was recommended that I talk further with rad doctor about that. I'm having difficulty finding more information on Prostascint but have found some. It sounds as if it may be as high as 70-72% accurate at finding cancer cell location. Do you (or anyone else) have any sources or experience with ProstaScint scans? Also, do you know of any other studies that validate EORTC 22911 study?

    Thanks

    Looking for answers to your question
    My husband had a radical prostatectomy in 2006. His PSA has never been 0 but has been less than 1 - in fact less than 0.50. He went to the urologist last week and he had him do a bone scan and scheduled a Prostascint. I have been reading and trying to find out why he is having this test done at this point. So I am interested in the answers you got from here or from your experience. The urologist said he may have to have "a little" radiation. The Prostascint is scheduled for next week. The first appointment is to put the nuclear medicine in and then wait 4 days and do the scan. Then two days later he will go and find out what the urologist has to say about it. I am wondering why the urologist has not sent him to an oncologist.
  • Kongo
    Kongo Member Posts: 1,166 Member

    Looking for answers to your question
    My husband had a radical prostatectomy in 2006. His PSA has never been 0 but has been less than 1 - in fact less than 0.50. He went to the urologist last week and he had him do a bone scan and scheduled a Prostascint. I have been reading and trying to find out why he is having this test done at this point. So I am interested in the answers you got from here or from your experience. The urologist said he may have to have "a little" radiation. The Prostascint is scheduled for next week. The first appointment is to put the nuclear medicine in and then wait 4 days and do the scan. Then two days later he will go and find out what the urologist has to say about it. I am wondering why the urologist has not sent him to an oncologist.

    Nana
    A prostascint scan looks to pinpoint cancer in areas like the lymph nodes, seminal vesicules and so forth. Like you described, prostascint is a two step process where first they inject a nuclear marker (a radioactive isotope with a very, very short half life) than will attach itself to any cancer cells. About four days after the radioactive marker is injected, they will do the scan where the isotope attached to the cancer cells can be easily detected. I am sure they probably also did a blood test which will look for potential cancer in the liver. A chest x-ray will look for tumors in the lungs. The bone scan looks for cancer hot spots in the bones and it also uses a radioactive market. These are all places where prostate cancer spreads when it leaves the prostate. Since your husband had his prostate removed four years ago, the residual PSA is an indication that there is still some cancer somewhere in his body and pinpointing its location is necessary before they determine which treatment might be necessary.

    The good news is that your husband's PSA seems to have remained very low since his surgery. This could well be an indication that the PCa in other parts of his body is the slow growing, indolent variety which may not pose any serious long term threat to his health.

    I suspect your urologist was trying not to upset your husband when he characterized it as "a little" bit of radiation. Typically, radiation treatments after radical prostectomies use a process called IMRT that takes about 45 sessions.

    Your doctor may consider some form of hormone therapy in conjunction with radiation. It all depends on what the tests show.

    On the other hand, if the tests don't show much cancer outside of the prostate bed and your husband's PSA readings remain low, maybe you don't need to do anything at all except monitor the PSAs. Depending on your husband's age, general health, and other factors you may decide that the potential impact on his quality of life does not warrant additional treatments, particularly if the PSA remains low and there are no other cancer symptoms.

    Whatever the tests show, I hope you get some second opinions.

    Hope all of this works out well for you and keep us posted.
  • HillBillyNana
    HillBillyNana Member Posts: 107
    Kongo said:

    Nana
    A prostascint scan looks to pinpoint cancer in areas like the lymph nodes, seminal vesicules and so forth. Like you described, prostascint is a two step process where first they inject a nuclear marker (a radioactive isotope with a very, very short half life) than will attach itself to any cancer cells. About four days after the radioactive marker is injected, they will do the scan where the isotope attached to the cancer cells can be easily detected. I am sure they probably also did a blood test which will look for potential cancer in the liver. A chest x-ray will look for tumors in the lungs. The bone scan looks for cancer hot spots in the bones and it also uses a radioactive market. These are all places where prostate cancer spreads when it leaves the prostate. Since your husband had his prostate removed four years ago, the residual PSA is an indication that there is still some cancer somewhere in his body and pinpointing its location is necessary before they determine which treatment might be necessary.

    The good news is that your husband's PSA seems to have remained very low since his surgery. This could well be an indication that the PCa in other parts of his body is the slow growing, indolent variety which may not pose any serious long term threat to his health.

    I suspect your urologist was trying not to upset your husband when he characterized it as "a little" bit of radiation. Typically, radiation treatments after radical prostectomies use a process called IMRT that takes about 45 sessions.

    Your doctor may consider some form of hormone therapy in conjunction with radiation. It all depends on what the tests show.

    On the other hand, if the tests don't show much cancer outside of the prostate bed and your husband's PSA readings remain low, maybe you don't need to do anything at all except monitor the PSAs. Depending on your husband's age, general health, and other factors you may decide that the potential impact on his quality of life does not warrant additional treatments, particularly if the PSA remains low and there are no other cancer symptoms.

    Whatever the tests show, I hope you get some second opinions.

    Hope all of this works out well for you and keep us posted.

    Thanks for the good info
    Nana, thank you for the good info. I am hoping for the slow-growing indolent variety. He is 71 and in excellent health. He has seemed a little more tired lately, but I have blamed the hot weather for that. Thanks again for the info. We will let you know what the prostascint shows.
  • ezra99
    ezra99 Member Posts: 18

    Looking for answers to your question
    My husband had a radical prostatectomy in 2006. His PSA has never been 0 but has been less than 1 - in fact less than 0.50. He went to the urologist last week and he had him do a bone scan and scheduled a Prostascint. I have been reading and trying to find out why he is having this test done at this point. So I am interested in the answers you got from here or from your experience. The urologist said he may have to have "a little" radiation. The Prostascint is scheduled for next week. The first appointment is to put the nuclear medicine in and then wait 4 days and do the scan. Then two days later he will go and find out what the urologist has to say about it. I am wondering why the urologist has not sent him to an oncologist.

    Prostascint
    I was debating about having a Prostascint as my urologist thought it may be helpful in giving additional information to me that could help me make a decision about radiation treatment. I did meet with a radiation oncologist and medical oncologist prior to making a decision whether to get the scan. After discussing it with all three MD's, I decide not to have the scan. I had concerns about the reliability of the scan, although I'm sure there are people here that feel it was very useful for them. I hope the scan results are helpful to you and your husband in making further treatment decisions.