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  • What is your experience with Radiation Therapy Long Term side effects?

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    Old 02-23-2020, 11:05 AM   #1
    OldTiredSailor
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    What is your experience with Radiation Therapy Long Term side effects?

    I am trying to understand what seems to be a serious difference between what members here report as long term side effects from radiation therapy and the percentage of serious adverse side effects I find reported in medical research.

    Most folks here report few or no long-term problems after RT.

    Can those of you who have received IMRT for prostate cancer, either as a primary or secondary treatment, briefly describe any side effects you consider serious enough to effect your quality of life?

    I am only interested in effects that began more than 3-months after therapy and failed to resolve within a year or so. Acute problems that resolved within a few months after the end of RT are not my concern.

    I have found 15 research papers about IMRT patients who reported long term side effects. All except one in 2011 were published in 2015 or later. There are more than 10,000 post-RT men reporting in the 13-studies.

    They AVERAGE more than 10% reporting Grade 2 or worse GI problems and 20% Grade 2 or worse Urinary problems.

    Only six studies report less than 7% Grade 2 GI problems and four of them, covering more than 8,000 men report greater than 24% have long term Grade 2 or worse.

    Those are astoundingly high (1 of 4 men?) with serious GI issues at least 3-years after treatment.

    Even Walsh (4th edition) reports that about 10% of aRT/SRT patients
    required medical treatment for GI problems.

    Do the research papers reflect your actual experience?

    My impression here is that very few men receiving IMRT ever experience long term problems. No one ever comes back to the website, years after RT, to say they are still suffering from GI problems.

    Both radiation oncologists I have talked with about SRT report that fewer than 2% of their patients have long term problems and those are easily resolved.

    A particularly scary report is Sanguineti (2017) who used data from 6,933 men in the English National Health Services database who received IMRT between 2010 and 2013. He reports 17% had Grade 2 or worse long term GI problems and 11% of those men had long term Grade 3 or worse urinary problems.

    I know that the radiation dosage is a significant factor in RT toxicity and I am pretty sure that all the studies I am considering used 70.2 Gy or LESS.

    What is the reality of long term post-RP toxicity?

    The RTOG grade 2 late GI scoring criteria include: “moderate diarrhea and colic; bowel movement >5 times daily
    Grade 2 Urinary is primarily increase frequency beyond what was previously normal
    __________________
    DOB: July 1947
    RALP 8/23/18 pT3a, G7 (3+4), 20% involvement, SM+ (Focal 2mm G6), EPE(Focal G6)+, PNI+, LNI-, SVI-, LVI-
    7g Tumor 20x size in MRI & biopsy report & in BOTH lobes not just L as biopsy reported
    Decipher RP = 0.47, which is .01 above a LOW risk

    Post-RP PSA
    10/3/18 0.021 01/4/19 0.018 04/03/19 0.022 06/26/19 0.028 10/1/19 0.035 1/1/20 0.050

     
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    Old 02-23-2020, 12:17 PM   #2
    DaveinMaryland
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    Re: What is your experience with Radiation Therapy Long Term side effects?

    I am 1 year removed from SRT with a 6 month Lupron shot given 1 month before starting SRT. No side effects. I also had vitually no side effects from the Lupron. Very mild warm flashes (not even hot).
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
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    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
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    Old 02-23-2020, 01:00 PM   #3
    Terry G
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    Re: What is your experience with Radiation Therapy Long Term side effects?

    I too find very few men on either of the two PCa forums I follow reporting significant side effects from RT. I’m just a data point of one and as such can report I remain sexually active w/o pills, my urinary function remains excellent, and my bowel function is fine. I did have some very brief burning when urinating during my treatment period that lasted about 10 days. I was able to maintain a cycling schedule (75 miles/week) even while being treated with only a little discomfort in my crouch. My RO says my situation is the norm. BTW my most recent PSA 2/20 suggests I may be past my ‘bounce’ phase. We never know what the future may bring or I maybe just one of the lucky ones? In any event I’m glad to have found forums like this one so that I was able to make an informed treatment decision.
    __________________
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    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
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    Old 02-23-2020, 05:04 PM   #4
    Southsider170
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    Re: What is your experience with Radiation Therapy Long Term side effects?

    Quote:
    Originally Posted by OldTiredSailor View Post
    I am trying to understand what seems to be a serious difference between what members here report as long term side effects from radiation therapy and the percentage of serious adverse side effects I find reported in medical research.

    The one point I think you need to consider on this is the advances in radiation treatment over the years. The side effects endured by someone who had radiation in the 80's or 90's would be a lot more than those who underwent the therapy later. Further, not every facility necessarily has and newest and presumably safest equipment.

    Like with the prostate cancer disease process, every one who has it can have a different experience.

     
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    Old 02-23-2020, 05:23 PM   #5
    Eonore
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    Re: What is your experience with Radiation Therapy Long Term side effects?

    My salvage radiation finished last May, and hormone therapy ended in July. The only side effect I have noticed is a slight diminishment of my urinary control. I still use one light pad a day, but the drips and dribbles have increased a little bit. Otherwise nothing.

    Eric

     
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    Old 02-24-2020, 02:26 PM   #6
    Prostatefree
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    Re: What is your experience with Radiation Therapy Long Term side effects?

    Great question! I'd like to hear from those 5 years and 10 years out. Be honest.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    12-8-19 PSA less than 0.02, zero club 3.5 yrs

     
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    Old 02-24-2020, 02:41 PM   #7
    OldTiredSailor
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    Re: What is your experience with Radiation Therapy Long Term side effects?

    Quote:
    Originally Posted by Southsider170 View Post
    The one point I think you need to consider on this is the advances in radiation treatment over the years. The side effects endured by someone who had radiation in the 80's or 90's would be a lot more than those who underwent the therapy later. Further, not every facility necessarily has and newest and presumably safest equipment.
    That was my thinking as I ponder my SRT decision.

    BUT - that British National Health Services study with almost 7,000 subjects really caught my attention. ALL of the treatments occurred from 2010 onward and all were IMRT. Reading the study - it sounds like IMRT, when administered by the NHS, is pretty standardized so variations in equipment and competence of the RO and technicians should average out over 3-years and 7,000 subjects.

    I just can't understand the difference between what my two ROs tell me and what the major research reports.
    __________________
    DOB: July 1947
    RALP 8/23/18 pT3a, G7 (3+4), 20% involvement, SM+ (Focal 2mm G6), EPE(Focal G6)+, PNI+, LNI-, SVI-, LVI-
    7g Tumor 20x size in MRI & biopsy report & in BOTH lobes not just L as biopsy reported
    Decipher RP = 0.47, which is .01 above a LOW risk

    Post-RP PSA
    10/3/18 0.021 01/4/19 0.018 04/03/19 0.022 06/26/19 0.028 10/1/19 0.035 1/1/20 0.050

     
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    Old 02-24-2020, 06:47 PM   #8
    Terry G
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    Re: What is your experience with Radiation Therapy Long Term side effects?

    @OTS...possibly the difference is in reading the data? When I was trying to determine what was my best treatment option I relied a lot on the Katz 7 and 10 year results regarding SBRT as a monotherapy. I have no experience with secondary treatments.

    Since SBRT is relatively new I found the Katz data to be relatable and easily understood by someone not medically trained. That data shows urinary issues of about 10% and bowel issues of about 4-5%. However, those were about the same percentages of problems prior to treatment. There were slightly higher numbers short term following treatment but it appears most everyone returned to baseline. In other words almost no one had worse urinary or bowel issues 6 months following treatment. Although a significant number of men had problems prior to treatment. This was a limited study of mostly low risk guys. As I recall it included about 250 men. I don’t recall exactly where but I remember seeing similar data reported by Memorial Sloan Kettering. I did find it difficult to actually get studies that I could actually understand the data. In my discussions with my RO at Cleveland Clinic both prior to and following treatment my situation of essentially no long term issues of urinary or bowel problems is the norm.

    I was also concerned about secondary cancer as a result of RT. Again it was difficult to find data that was relatable or easily available. I found estimates of anywhere from 4-7 cases per 1,000 for older data and 4-7 cases per 10,000 for newer image guided treatments. As I come to know my RO I believe he’s the kind to under promise and over deliver. He uses, “less than 1% per decade”.

    Any treatment including AS carries risks, advantages and disadvantages. For my situation the risks of RT treatment were reasonable. I encourage everyone recently diagnosed to investigate and understand their options and make an informed decision. For some situations surgery is the best option and for others RT maybe best.

    I believe we don’t see a lot of people on this and other forms reporting RT problems because the numbers are small. It won’t be the first time I’ve been wrong so I apologize to those that have experienced problems as a result of RT. Just sharing my experience as a data point of one.
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3

     
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    Old 02-25-2020, 11:48 AM   #9
    IADT3since2000
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    Re: What is your experience with Radiation Therapy Long Term side effects?

    Hi OTS. I'm glad you are getting a lot of replies with first-hand experience.

    Now at the seven year point following radiation in 2013, I have been pleased with the very low level of long-term side effects for me, consistent with my expectations based on research and advice from my doctors, especially after an image guided 46 Gy set of pelvic doses and 78 Gy in 39 fractions to the prostate for my once high-risk, life-threatening case. I was on 18 months of ADT3 in support (my fourth round of intermittent ADT since late 1999). My impression from following prostate cancer for 20 years as a patient is that the side effect burden for the average patient from radiation is both low and much lighter than the average burden from surgery, which research bears out. That said, some surgery patients do very well, as witnessed on this Board.

    I have no urinary continence issues. Zero! Zero urinary accidents! Zero lack of control! Zero leakage! My impression is that this is typical for radiation patients for long-term side urinary effects, but is certainly not universal. This is based on modern era radiation, with radiation in the early 2000s and earlier, except at major pioneering centers, often having substantial urinary and bowel continence side effects. Research indicates that bothersome urinary and bowel side-effects are in the low single digit percentages for radiation. My impression is that the norm for surgery patients is a mild level of urinary side effects, including occasional or minor daily leakage, often conveniently managed with pads or adult diapers, but with some patients having full control and others with some burdensome and inconvenient long-lasting problems.

    I have mild, grade 1, bowel continence issues that are a minor inconvenience. Never an “accident,” but specifically, I need to go more often, urgently in the morning, and with looser, smaller bowel movements. I feel an urgent need to go after waking in the morning and moving around a bit as I get up. I also feel an urgent need to go shortly after breakfast, and again around 11 AM. I have found that the social environment makes a surprising difference, with no need to go on Sunday at 11 AM when I am at church, and the same has happened for morning meetings; that means I have some subconscious control of the urgency. I normally have to go one more time, not urgently, during the day. Altogether this is a small deal, no issue, an insignificant factor in my life. If I were to do radiation today in 2020 instead of back in 2013, when the SpaceOAR gel was just being introduced, I would want the SpaceOAR to minimize or avoid bowel issues.

    Diet seems to matter. My diet includes little dairy food, including cheese, which we parents know is a binder for stool for our kids, in contrast to applesauce which loosens things up, and my diet also includes a lot of fiber, which probably makes things looser. I recently had a colonoscopy, and the prep week included a major deviation from my usual diet, with daily cheese a nice temporary addition. I noticed that firmed me up a lot, which continued for a week or so after the procedure, despite going back to a minimal cheese diet. (Cheese may be fine, but I am trying to minimize risk, and dairy food has been identified as a possible factor that adds a small amount of risk for prostate cancer patients, so I minimize it.) Mr. Kellogg, founder of the cereal empire, consumed a lot of fiber – rather fanatic about it, and had to wear diapers as I recall from a documentary about him, so I’m thinking that substantial fiber in my diet, though promoting health and much less than Kellogg’s, fosters this minor inconvenience.

    Another indicator of the low level of continence issues for radiation patients is the fact that it is hard to find specialists to deal with the infrequent to rare cases where the patient is really bothered. This is well known. (I can provide a lead to at least one specialist whom I learned about at a conference in response to an expert’s question about this to a radiation expert.) In sharp contrast, it is fairly easy to find specialists who deal in post-prostatectomy urinary continence issues, in fact there is a substantial industry to address such problems, with options ranging from simple tactics such as pads, diapers and Kegel exercises to catheter collection, clamps, physical therapy, slings and artificial sphincters, some of which involve further surgery and are often not fully effective, though also often quite helpful. I’ll bet that many radiation veterans do not even know what a Kegel is, which illustrates the difference in after-treatment experiences.

    Hope this helps.

    Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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