Looking for experiences on Salvage RT and its side effects

lathanb
lathanb Member Posts: 4
in Prostate Cancer #1

Hello all !

My PSA is rising after having a prostatectomy in March 2007. My pre-surgery PSA was 3.9 ng/ml. Surgical Pathology reported Gleason grade 7 (3+4) and Cancer Stage pT2b with no seminal or lymph node involvement. My PSA remained stayed undetectable for approximately 6 ½ years. Current PSA value is 0.37 ng/ml and PSA doubling time is 23.8 months.                                                        Late December 2014,  I participated in a National Institute of Health Clinical Trial which involved a whole body PET/CT scan with a modified Fludeoxyglucose (18F)  radio-tracer. No evidence of distant or regional lymph node metastasis were found. However, they found a suspicious uptake in surgical clips in the prostate bed superior inferior to the bladder. Although this was not biopsy proven, my Urologist recommends salvage radiation to prostate bed. The radiologist recommended 40 treatments at 1.8 Gy (72 Gy).

I would appreciate if you can share any early or late side effects experienced with salvage radiation after a radical prostatectomy?

                     Lathanb

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #2
    My SRT experience

    Lathanb

    I sincerely hope that guys here pass you a note on their SRT own experience or about what they know from other patients’ cases. Though, as a principle in prostate cancer matters, no equal cases exist. Similarities may lead one to judge own experiences and help in formulating a decision.

    My experience with the SRT was obtained in 2006. I was then 56 years old, free of stresses and though being well prepared (informed) about the therapy and its probable consequences. A relaxed posture (confidence) seemed to me to be important while in the treatment and when confronting its side effects. Unfortunately SRT in my case did not manage to “kill” the bandit.

    The initial diagnosis of 2000 was a Gleason grade 5 (2+3), voluminous cancer (6 out of 6 positive cores) in high PSA (22.4) status. After prostatectomy the pathological stage was pT3apN0 and the PSA post RP never reached remission levels (<0.06), starting at 0.12 (three weeks after RP) and rising to 0.42 seven months post RP. PET and ProstaScint back in 2001 were unreliable and all CT and MRI were negative which lead specialists (Japan, JH and MSKCC) to consider in me a micrometastases case, hard to be detected. I was symptom less with rising PSA (PSADT=14 months). The medical oncologist at MSKCC recommended a WW approach to allow time to locate the cancer for late “attack”. This was a matter of controversy among the ones that believed on earlier SRT administration (PSA<0.2). In trials of 2003, earlier SRT (administered blind with no targets) shown biochemical free relapse at the 5 year mark post SRT, which were better results than the cohort of patients who did SRT with higher PSA levels (PSA>0.2).
     Still many radiologists at the time would not see a reason to treat a number (PSA) than a symptom.

    Accordingly, when my PSA reached 3.8 (6 years post RP) and negative image studies, all the doctors following my case suggested starting salvage radiotherapy. The protocol was to radiate the pelvic area (prostate bed and lymph nodes) with a total dosage of 68Gy in 37 fractions (every day except Sundays), with photons of 15MV. This was the standards in 2006.

    The facilities and team of physicians were modern with newer IMRT machines and experienced staff. The clinic was located 45 KM far from my home easily accessed which is essential for this kind of therapy. I held weekly consultations with the radiologist and sometimes he would show me and inform on live data maps (isodose planning). For accuracy on the positioning of the organs (they move everyday), and for alignment with the machines’ head, inked spots were marked on my abdomen during a MRI section, once before SRT and two more times during the two months treatment.

    The daily sections were very easy to take and become a kind of a routine. One hour in advance I would drink lots of water to fill the bladder (it helps in securing the bladder in place minimizing the radiation risks), then I would drive to the clinic, dress a light gown and lay face up on the machine’s stretcher while the beam head would move around me stopping here and there. All actions and movements were controlled by the staff in their computer screens, in a separate room. It would take approximately 10 to 15 minutes (1 to 3 minutes under radiation). I never felt fatigue (played golf on weekends) or nausea. I had a sensation of burning pain on my fifths’ week of treatment when urinating and the stool became much liquefied with traces of blood (proctitis), although no skin burning marks. These side effects were mitigated with separate medicines during the four month post treatment, however, the radiation caused a partial loss of rectum sensation when passing stool which took five years to become more consistent to normalcy. In any case, I never experienced incontinence during the 8.5 years post SRT.

    My late side effects experience from radiation may be related to a case of Diverticulosis of two years ago. I found traces of blood in my stool but had no symptoms and become worried with ulcerative colitis. Through a colonoscopy the doctor diagnosed diverticulosis and commented to have origins from radiation scars of 2006. I just changed diets and the problem solved.
    Last year I had a nasty episode of Shingles which causes are not identifiable. But radiation can lead to prejudice of the immune system in an earlier timing than the natural aging process linked to shingles in older people. This is a sickness common in guys over the 70th.

    There are several net sites explaining about SRT and its side effects. You can try google them for details. A good one is the link of the Prostate Cancer Foundation that introduces the general aspects of the SRT. However, I do not agree with many of the contents in the link. I believe that radiation should be applied to definite targets which nowadays with the newer contrast agents in PET/CT exams have better chances of being identified. Surely this choice would require allowing the PSA rise to levels more suggestive of positive exams, in the PSA bracket above 2.0. Image studies done in the presence of low levels of PSA provide common false negatives, leading to “blind” treatments in earlier administration (guessing style). The choices in contrast agents depend on Gleason grades and patient status. I would also recommend you to read the following link in case you decide to give a chance to locate the metastases.

    At the end, one cannot assure hit the bull’s eye throwing arrows in the dark but it may be lucky.

    Here is the link of Prostate Cancer Foundation;
         http://www.pcf.org/site/c.leJRIROrEpH/b.5839311/k.13F6/Radiation_Therapy_Following_Prostatectomy.htm

    Here is the link to contrast agents in PET/CT exams;
         http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3012154/

    I hope my post is of help to you. You are doing it well in educating yourself before committing to a treatment that should not be repeated. Radiation of previously radiated areas is risky and not recommendable because body tissue has limits in its ability of absorbing radiation. Over doses are risky to fistulas in the organs.

    Best wishes,

    VGama

  • lathanb
    lathanb Member Posts: 4
    #3
    VascodaGama said:

    My SRT experience

    Lathanb

    I sincerely hope that guys here pass you a note on their SRT own experience or about what they know from other patients’ cases. Though, as a principle in prostate cancer matters, no equal cases exist. Similarities may lead one to judge own experiences and help in formulating a decision.

    My experience with the SRT was obtained in 2006. I was then 56 years old, free of stresses and though being well prepared (informed) about the therapy and its probable consequences. A relaxed posture (confidence) seemed to me to be important while in the treatment and when confronting its side effects. Unfortunately SRT in my case did not manage to “kill” the bandit.

    The initial diagnosis of 2000 was a Gleason grade 5 (2+3), voluminous cancer (6 out of 6 positive cores) in high PSA (22.4) status. After prostatectomy the pathological stage was pT3apN0 and the PSA post RP never reached remission levels (<0.06), starting at 0.12 (three weeks after RP) and rising to 0.42 seven months post RP. PET and ProstaScint back in 2001 were unreliable and all CT and MRI were negative which lead specialists (Japan, JH and MSKCC) to consider in me a micrometastases case, hard to be detected. I was symptom less with rising PSA (PSADT=14 months). The medical oncologist at MSKCC recommended a WW approach to allow time to locate the cancer for late “attack”. This was a matter of controversy among the ones that believed on earlier SRT administration (PSA<0.2). In trials of 2003, earlier SRT (administered blind with no targets) shown biochemical free relapse at the 5 year mark post SRT, which were better results than the cohort of patients who did SRT with higher PSA levels (PSA>0.2).
     Still many radiologists at the time would not see a reason to treat a number (PSA) than a symptom.

    Accordingly, when my PSA reached 3.8 (6 years post RP) and negative image studies, all the doctors following my case suggested starting salvage radiotherapy. The protocol was to radiate the pelvic area (prostate bed and lymph nodes) with a total dosage of 68Gy in 37 fractions (every day except Sundays), with photons of 15MV. This was the standards in 2006.

    The facilities and team of physicians were modern with newer IMRT machines and experienced staff. The clinic was located 45 KM far from my home easily accessed which is essential for this kind of therapy. I held weekly consultations with the radiologist and sometimes he would show me and inform on live data maps (isodose planning). For accuracy on the positioning of the organs (they move everyday), and for alignment with the machines’ head, inked spots were marked on my abdomen during a MRI section, once before SRT and two more times during the two months treatment.

    The daily sections were very easy to take and become a kind of a routine. One hour in advance I would drink lots of water to fill the bladder (it helps in securing the bladder in place minimizing the radiation risks), then I would drive to the clinic, dress a light gown and lay face up on the machine’s stretcher while the beam head would move around me stopping here and there. All actions and movements were controlled by the staff in their computer screens, in a separate room. It would take approximately 10 to 15 minutes (1 to 3 minutes under radiation). I never felt fatigue (played golf on weekends) or nausea. I had a sensation of burning pain on my fifths’ week of treatment when urinating and the stool became much liquefied with traces of blood (proctitis), although no skin burning marks. These side effects were mitigated with separate medicines during the four month post treatment, however, the radiation caused a partial loss of rectum sensation when passing stool which took five years to become more consistent to normalcy. In any case, I never experienced incontinence during the 8.5 years post SRT.

    My late side effects experience from radiation may be related to a case of Diverticulosis of two years ago. I found traces of blood in my stool but had no symptoms and become worried with ulcerative colitis. Through a colonoscopy the doctor diagnosed diverticulosis and commented to have origins from radiation scars of 2006. I just changed diets and the problem solved.
    Last year I had a nasty episode of Shingles which causes are not identifiable. But radiation can lead to prejudice of the immune system in an earlier timing than the natural aging process linked to shingles in older people. This is a sickness common in guys over the 70th.

    There are several net sites explaining about SRT and its side effects. You can try google them for details. A good one is the link of the Prostate Cancer Foundation that introduces the general aspects of the SRT. However, I do not agree with many of the contents in the link. I believe that radiation should be applied to definite targets which nowadays with the newer contrast agents in PET/CT exams have better chances of being identified. Surely this choice would require allowing the PSA rise to levels more suggestive of positive exams, in the PSA bracket above 2.0. Image studies done in the presence of low levels of PSA provide common false negatives, leading to “blind” treatments in earlier administration (guessing style). The choices in contrast agents depend on Gleason grades and patient status. I would also recommend you to read the following link in case you decide to give a chance to locate the metastases.

    At the end, one cannot assure hit the bull’s eye throwing arrows in the dark but it may be lucky.

    Here is the link of Prostate Cancer Foundation;
         http://www.pcf.org/site/c.leJRIROrEpH/b.5839311/k.13F6/Radiation_Therapy_Following_Prostatectomy.htm

    Here is the link to contrast agents in PET/CT exams;
         http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3012154/

    I hope my post is of help to you. You are doing it well in educating yourself before committing to a treatment that should not be repeated. Radiation of previously radiated areas is risky and not recommendable because body tissue has limits in its ability of absorbing radiation. Over doses are risky to fistulas in the organs.

    Best wishes,

    VGama

     Thanks for taking the time to relate your experience with salvage radiation. I agree that each patient's experience and outcome with radiation will not be the same. A total radiation dosage of 72 Gy (in 40 fractions) without a targeted tumor is of great concern to me. I understand that there is a correlation between radiation dose escalation and increased side effects.

    I entered my PCa medical data into MSKCC, N.Y. Salvage Radiation Therapy monogram which predicts whether a recurrence of prostate cancer after radical prostatectomy can be treated successfully with salvage radiation therapy. It calculates the probability that the cancer will be controlled and PSA level undetectable six years after salvage therapy. My probability of being disease free for 6 years is 56%. However, one may still experience progressive disease more than 6 years after Salvage radiation. Furthermore the nomogram does not provide information as to the probability of developing metastatic disease as a result of prostate cancer after salvage radiation.

    I understand that the Mayo Clinic in Rochester, Mn has had great success with C11 Choline PET/CT scans for locating metastases when PSA levels are between 1 and 2 ng/ml. However, the Director of the clinic, Dr. Eugene Kwon, stated that most medical insurance companies (including Medicare) will not pay for imaging unless the patient's PSA is at least 1.5 ng/ml or greater.

    BTW.... I printed the reports found on the links above for review.

                 Best Regards,

                             Lathanb

     

     

     

  • Old-timer
    Old-timer Member Posts: 196
    #4
    My exerience re salvage radiation

     

    Following is an outline of my PC experiences. I had RPS 24 years ago, salvage radiation 10 years ago, went on hormone therapy 7 years ago. My PSA has been not detectable for 7 years. The radiation did not change the PSA. The oncologist promised that I had only a 67 percent chance that it would be successful.

     

    The experience of taking 35 sessions of radiation was a nuisance, of course. The only discomfort I recall was having to hold the urine to fill the bladder. Lasting effect of radiation: scar tissue on the urethra resulting in more incontinence. In fairness to the oncologist, there is the chance that the scar tissue was caused by the original surgery. Would I accept radiation if I could change my choice? No, I thought 67 percent was good odds.

     

    Summing up, coping with PC for so many years sounds awful. I do not view it that way. Here I am nearing 89 and still have most of my faculties in reasonably good order. Good luck, perhaps.

     

    Good luck to you and the rest of my PC survivor friends.

     

    Old-timer (Jerry)

  • stoniphi
    stoniphi Member Posts: 54
    #5
    Old-timer said:

    My exerience re salvage radiation

     

    Following is an outline of my PC experiences. I had RPS 24 years ago, salvage radiation 10 years ago, went on hormone therapy 7 years ago. My PSA has been not detectable for 7 years. The radiation did not change the PSA. The oncologist promised that I had only a 67 percent chance that it would be successful.

     

    The experience of taking 35 sessions of radiation was a nuisance, of course. The only discomfort I recall was having to hold the urine to fill the bladder. Lasting effect of radiation: scar tissue on the urethra resulting in more incontinence. In fairness to the oncologist, there is the chance that the scar tissue was caused by the original surgery. Would I accept radiation if I could change my choice? No, I thought 67 percent was good odds.

     

    Summing up, coping with PC for so many years sounds awful. I do not view it that way. Here I am nearing 89 and still have most of my faculties in reasonably good order. Good luck, perhaps.

     

    Good luck to you and the rest of my PC survivor friends.

     

    Old-timer (Jerry)

    My experience with SRT

    At 62 years old I was diagnosed t3c N=0 M=0 Gleason (4+3)=7, 12 of 12 cores dirty with acinar adenocarcinoma, 2 extracapsular extentions, positive margins, perineural invasion removed in surgical margin, "some" nerves were "spared", 1 seminal vesicle invaded. I had DaVinci RARP Dec 2012, started on Firmagon 2 weeks later after post surgical PSA of .2, switched to Lupron after 3 months when I started 40 daily treatments with the Cyberknife (summer 2012). Total was about 80Gy. Most impressive device, for sure. They put 3 tatooed dots on me and made a cast of my lower body for placement on the table. Empty  bladder. The techs were up in a control room, a computer bank ran the process. After 6 months on Lupron I got switched to Eligard. I recieved a Cialis daily prescription to help heal the affected nerves (no sex interest or ability) and got a prescription to take a 1 hour nap every afternoon. At 64, that is really nice.

    The side effects of both the Eligard and the radiation therapy are similar in several areas, as in fatigue, intestinal distress and burning sensation of the urethra. For 2 years I cut my daily run to 6 miles, back up to 7 & 1/2 miles daily as of last month. Next blood test is next week, but PSA has been undetectible since I got the first shot of Firmagon. Continent now, wore a diaper for 2 weeks after surgery, then a guard for 3 months after that.

    When I was a child, I got my tonsils burned out with x - rays. I have a friend who got a brain tumor killed with radiation then too. They set him in a chair in front of a shelf with a lead box containing a piece of radioisotope cobalt. They told him to sit still, took the front off the box and left the room. They came back, closed the box and he left. The brain tumor died, he did not. 60 years later, his hair is still all gone from the back of his head, but other than that he has had a normal life as have I.

    It is better now. This technology improves all of the time, gets less invasive and more accurate as it does. While therapy for PCa can be not fun for a long time, it is tolerable and beats the heck out of being dead. As for radiation - specific side effects, I think that intestinal cramping, increased frequency of bowel movements and increased production of mucous are about the worst I have noticed and they are fading now.

    Best of luck to you.

  • lathanb
    lathanb Member Posts: 4
    #6
    Old-timer said:

    My exerience re salvage radiation

     

    Following is an outline of my PC experiences. I had RPS 24 years ago, salvage radiation 10 years ago, went on hormone therapy 7 years ago. My PSA has been not detectable for 7 years. The radiation did not change the PSA. The oncologist promised that I had only a 67 percent chance that it would be successful.

     

    The experience of taking 35 sessions of radiation was a nuisance, of course. The only discomfort I recall was having to hold the urine to fill the bladder. Lasting effect of radiation: scar tissue on the urethra resulting in more incontinence. In fairness to the oncologist, there is the chance that the scar tissue was caused by the original surgery. Would I accept radiation if I could change my choice? No, I thought 67 percent was good odds.

     

    Summing up, coping with PC for so many years sounds awful. I do not view it that way. Here I am nearing 89 and still have most of my faculties in reasonably good order. Good luck, perhaps.

     

    Good luck to you and the rest of my PC survivor friends.

     

    Old-timer (Jerry)

    My exerience re salvage radiation

    Old-timer (Jerry)

     

    Thanks for sharing your experience with Salvage Radiation. Did salvage radiation therapy include radiation of the prostatic fossa and pelvic lymph nodes? 

     

                      lathanb

  • stoniphi
    stoniphi Member Posts: 54
    #7
    lathanb said:

    My exerience re salvage radiation

    Old-timer (Jerry)

     

    Thanks for sharing your experience with Salvage Radiation. Did salvage radiation therapy include radiation of the prostatic fossa and pelvic lymph nodes? 

     

                      lathanb

    You are most welcome. Yes it

    You are most welcome. Yes it did.

  • CuriousCanuck
    CuriousCanuck Member Posts: 5
    #8
    No noticeable side effects from radiation

    My story here:

    http://csn.cancer.org/node/233532#comments

     

  • Josephg
    Josephg Member Posts: 461 Member
    #9
    My exerience salvage radiation

    My experience with salvage radiation is listed beloew.

    http://csn.cancer.org/node/188931?page=5  comment titled 'Salvage Treatment', dated Oct 30, 2013

    Please let me know if you have any questions that I may be able to answer.

    Good luck on your journey.

     

     

  • Old-timer
    Old-timer Member Posts: 196
    #10
    lathanb said:

    My exerience re salvage radiation

    Old-timer (Jerry)

     

    Thanks for sharing your experience with Salvage Radiation. Did salvage radiation therapy include radiation of the prostatic fossa and pelvic lymph nodes? 

     

                      lathanb

    I know not

    lathanb,

    On April 19, you asked me:

    "Thanks for sharing your experience with Salvage Radiation. Did salvage radiation therapy include radiation of the prostatic fossa and pelvic lymph nodes?"

    I do not know the answer. Sorry about that. And I apologize for not responding sooner. I had overlooked your message earlier.

    I am interested in knowing how you are faring. Conditions seem to continue about the same for me. I am doing well. Good luck to you.

    Old-timer

    Jerry

     

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