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Radiation Side Effects

Rob.Ski
Rob.Ski Member Posts: 36 **

I'm curious to hear experiences of people who have had radiation at a younger age that are now older.  How side effects of radiation may have progressed over time.  I have the impression that 10 - 20 years later more complications occur.

Comments

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

    Radiation delivery has improved over time; so past side effects are Really not comparable, in my opinion. 

  • Rob.Ski
    Rob.Ski Member Posts: 36 **
    .

    So, no data exists regarding long term side effects for current radiation methods?   That doesn't help decision making.  I've seen positive and negative results posted here for surgery but, not so much for radiation.  

    Have had a radiologist and multiple surgeons steer me toward surgery due to age (50).  They indicate complications show up later with radiation vs. earlier with surgery.  Wanted to get some info on younger people that chose radiation and see how they faired over the years.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 **
    edited June 2 #4
    .

    Here's a 10 year study of SBRT aka cyber knife. Hope this helps

     

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5679773/

     

  • Georges Calvez
    Georges Calvez Member Posts: 543
    Long term effects

    Hi there,

    Long term effects are dispersed, this means that they become more and more individual and difficult to predict.
    Both surgery and radiation affect the urinary sphincters.
    Surgery tends to result in short term leakage that improves with time and then declines with age.
    Radiation has complex effects, it may become hard to pee, then easier, then hard again, but it is unpredictable.
    Surgery tends to have a drastic effect on erectile ability, but things may get better.
    Radiation may have less effects initially but things may get worse due to damage to the nerves long term.
    More radiation increases the risk of bowel and bladder cancer, damage to the tops of the leg bones, etc.
    This is a hard one to call, some men pass through unharmed, while others have short or long term effects.

    Best wishes,

    Georges


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

    i am reposting comments  that I posted at a the payneortho61 thread. New CA diagnosis. If you go to that thread you can see responses.

    These comments are made by mark schols, Medical Oncologist who specializes in prostate cancer. He is world known author and sponsors pcri conferences for patients, Thousands attend each year.

    .





    The key to prostate cancer by mark sholz md(world renown medical oncologist who only specializes in prostate cancer presents 30 experts who explain 15 stages of prostate cancer

    Here are some comments made in the book about the side effects of surgery for your information. Of course you need to read book so that you will make your own deicsion, to determine  if these comments are appropriate.

    "only about 15 percent of men will have the same erectilefuncion two years after surgery as sthey had prior to surgery" Kelly Chiles md and john mulhall md in the chapter about sexual dysfunction...these docs specialize in sexual dysfunction

    With reference to incontenence

    "high bladder pressure with muscular spasmss of the the bladder that develop as the bladder fills occurs in 50 percent of men. It is possible athat these bladder spasms are related to nerve damage from protatectomy."

    Damage to the sphincter muscle occurs in 35 percent of men after surgery"

    "A combination of bladder spasms and sphincter damaage occurs 10 percent of the time"

    Gary Leach,MD (chapter on surgical side effects affecting urination) He specializes in the diaagnosis and treatment of incontinence--the above quotes talks about his patients.

    "In contrast to surgery, IMRT is noninvasive, with no need to make a single cutor remove an entire organ from the body. Because of this IMRT has a much lower risk of bleeding, pain and infection that surgical approaches. Furthermore, given that the urethra runs through the prostate, surgical removal of the prostate requires removal of part of the urethra, then stitching the cut ends back together, leaading to risk of urinary leakage that may requrie wearing  pads throughout the day. Surgery can also lead to to shorti=ening of the penis. By contrast, IMRT has a much lower risk of urinary leakage and essentially no risk of penis shortening"

    Zacgary Zumsteg md and howard sandler md, both radiation oncologists, one at cedars sinai

     

    The above are various non scientific based comments , not random study based, that simply show that major side effects are prevelant with surgery. Generally there are sub industries that developed to treat men that experienced side effects from surgery. This is written so you will think two, three or four times before you decide on having a prostectomy.

    At this site there are a few men, like cleveguy above, who have have surgery, and think that it's better than apple pie, so I am sure will provide you with comments

     




     

     

  • Rob.Ski
    Rob.Ski Member Posts: 36 **
    .

    Well, I am aware of possible side effects of surgery and have seen on this forum some positive and negative results.  What i am not familiar with is side effects from radiation, especially long term.  Was looking for anyone on here that has personally had radiation  and side effects that show up years later.   

  • Clevelandguy
    Clevelandguy Member Posts: 711
    Not all cases are alike

    Hi,

    My personal response from a person who has had surgery.








    The key to prostate cancer by mark sholz md(world renown medical oncologist who only specializes in prostate cancer presents 30 experts who explain 15 stages of prostate cancer

    Here are some comments made in the book about the side effects of surgery 

    With reference to incontenence

    "high bladder pressure with muscular spasmss of the the bladder that develop as the bladder fills occurs in 50 percent of men. It is possible athat these bladder spasms are related to nerve damage from protatectomy."

    Damage to the sphincter muscle occurs in 35 percent of men after surgery"

    Yes the sphincter is damaged during surgery but I recovered after about 1.5 yrs. to almost pre surgery conditions.  Just a drip every now & then during heavy lifiting.

    "By contrast, IMRT has a much lower risk of urinary leakage and essentially no risk of penis shortening"

    I don't really care if my Penis is a little shorter as long as my cancer is gone, urinary leakage is cited as a possibility with IMRT in the links I copied for you.

    The above are various non scientific based comments , not random study based, that simply show that major side effects are prevelant with surgery. Generally there are sub industries that developed to treat men that experienced side effects from surgery. This is written so you will think two, three or four times before you decide on having a prostectomy.

    Wow,, this comment just about says it all, talk about scare tactics!

    At this site there are a few men, like cleveguy above, who have have surgery, and think that it's better than apple pie, so I am sure will provide you with comments.

    Surgery or radiation is not better than apple pie, surgery or radiation will leave you with side effects but as I stated earlier results will vary with doctors and facilities.  Most not all people make very good recoveries after a period of time.

    Do you homework, study the effects and choose, it's your body and your life after treatment.  Don't be swayed by people who say that all surgery or all radiation is bad, they obviously don't speak from an objective viewpoint.

    Dave 3+4

     




     

     




  • Old Salt
    Old Salt Member Posts: 834 **
    edited June 4 #10
    Few reliable data

    Studies that report side effects that occur after 10-20 years are few and far between. 

    Not surprising, really, considering that not many academic types follow patients for that long. Moreover, the number of patients that are reporting back will keep dwindling. 

    There are many studies reporting side effects from radiation that occur after a few years (1-10). 

    Here are the results from one such study:

    Acute and Late Urinary Toxicity following Radiation in Men With an Intact Prostate Gland or after a Radical Prostatectomy: A Secondary Analysis of RTOG 94-08 and 96-01 (nih.gov)

    Results

    Grade≥2 acute urinary toxicity was significantly higher after primary prostatic radiation compared to post-prostatectomy radiation (30.8% versus 14.0%; p<0.001), but acute grade≥3 toxicity did not differ (3.8% versus 2.7%; p=0.54). After adjusting for age, primary radiation resulted in significantly higher grade≥2 acute urinary toxicity (OR:3.72; 95% CI:1.65–8.37; p=0.02). With median follow-up of 7.1 years, late urinary toxicity was not significantly different with primary versus post-prostatectomy radiation (5-year Grade≥2: 16.7% versus 18.3%; p=0.65; Grade≥3: 6.0% versus 3.3%; p=0.24).

     

    PS: I find the previous posts all relevant.

  • ASAdvocate
    ASAdvocate Member Posts: 164
    edited June 4 #11
    Old Salt said:

    Few reliable data

    Studies that report side effects that occur after 10-20 years are few and far between. 

    Not surprising, really, considering that not many academic types follow patients for that long. Moreover, the number of patients that are reporting back will keep dwindling. 

    There are many studies reporting side effects from radiation that occur after a few years (1-10). 

    Here are the results from one such study:

    Acute and Late Urinary Toxicity following Radiation in Men With an Intact Prostate Gland or after a Radical Prostatectomy: A Secondary Analysis of RTOG 94-08 and 96-01 (nih.gov)

    Results

    Grade≥2 acute urinary toxicity was significantly higher after primary prostatic radiation compared to post-prostatectomy radiation (30.8% versus 14.0%; p<0.001), but acute grade≥3 toxicity did not differ (3.8% versus 2.7%; p=0.54). After adjusting for age, primary radiation resulted in significantly higher grade≥2 acute urinary toxicity (OR:3.72; 95% CI:1.65–8.37; p=0.02). With median follow-up of 7.1 years, late urinary toxicity was not significantly different with primary versus post-prostatectomy radiation (5-year Grade≥2: 16.7% versus 18.3%; p=0.65; Grade≥3: 6.0% versus 3.3%; p=0.24).

     

    PS: I find the previous posts all relevant.

    Exactly the Misleading Study

    If you dig into this study it involved patients treated mostly in the 1990's, before any of the current radiation devices were deployed.

    We all know tha radiation was inaccurate and caused toxicities in that period. I consider the modern age of RT to start from about 2005.

    Unfortunately, studies like this one are STILL being distributrd by urologist offices to steer men towards surgery.

    Modern beam radiation (IMRT, SBRT, and protons) have very impressive ten year studies. In fact, I have never seen any study that showed that surgery could match the non-recurrence results of SBRT/Cyberknife. Not even close.

  • Rob.Ski
    Rob.Ski Member Posts: 36 **
    .

    Thanks for the responses.   I recently had a colonoscopy and resulrs were good.  Do they look for something different then the normal polyps and whatever else is done with normal colonscopy pre RT?

  • VascodaGama
    VascodaGama Member Posts: 3,429 **
    edited June 4 #13
    Progressive effects in PCa RT

    Hi Rob,

    I doubt that you will receive many answers/comments to your inquire regarding the actual side effects experienced by survivors in PCa radiotherapies. Many guys here prefer to comment on the scale of the risks you may confront in case you choose RP or RT because the results from any therapy cannot be used in a decision process. Each case is unique to the holder and the effects from a certain type of therapy may be experienced differently among the survivors.

    Accordingly, the results from studies done to verify the Acute Toxicity experienced by patients are also not practicable to be used in a decision process. Your thoughts may be influenced by those studies but these come from a wide variety of cases with a wide variety of variables (age, radiation dose, treated field, type of Gleason, etc). In other words, in PCa there is not what we expect as one therapy treats all.

    In my salvage radiation treatment of 2006 (IMRT), I experienced diarrhea during the first three months post RT (grade 2 AE)as short term side effects. All other effects were asymptomatic therefore judged as grade 1 AE. At 5 years mile stone, I experienced blood in stool which from a colonoscopy was diagnosed as diverticulitis (a natural way of clean the colon done by our body), but the same image study verified existing radiation proctitis/cystitis which could in fact be the cause of the bleeding (grade 2 AE). In 2018 I had blood in urine and a cystoscopy reveled radiation cystitis in the urethra considered to be a RT late side effect development from the initial asymptomatic experience of 2006 (grade 1 to grade 2 AE).

    I never experienced urinary or fecal incontinence along my 21 years as a survivor, respectively from surgery (2000) and radiotherapy (2006) but recently I experience a shorter time for holding the urge to urinate or stool discharging. This started to affect my natural way of life. In 2019 I was negated a oligometastatic treatment due to the presence of radiation cystitis in the area where malignancy was identified in a PET scan. My doctor (uro-oncologist) is a experienced HOT (hyperbaric oxygen treatment) therapist and commented that the malignancy could be soft tissue affected with RT cystitis, which in fact requires HOT if inflammation develops and becomes nasty.
    In regards to the above, most probably I will experience in the future radiation grade 3 AE which could be classified as RT late side effects.

    Along the years as a member in this and other forums, I read reports from guys that had nasty experiences with PCa radiotherapy. The worse cases are fistulas that drastically change the quality of life of the patient. One guy in particular was in need of bladder and colon surgery as a result from a PCa prime IMRT in 2009. Some other cases were from guys that had ulcerative colitis (asymptomatic) without knowing and did radiotherapy which condition is supposed to be prohibitive to RT decisions.

    Surely surgery has its pitfalls too and the ED risk is hard to be accepted by young patients. If you choose RT you better investigate further doing a colonoscopy before deciding.

    You doing well in investigating further.

    Best wishes

    VGama 

    experiences with urethra issues are all negative in RP or RT

     

  • VascodaGama
    VascodaGama Member Posts: 3,429 **
    edited June 4 #14
    Traditional colonoscopy is highly accurate

    Well, in traditional colonoscopy (with camera) we could expect that the doctor checks the whole upper and lower colon areas and arround the walls. CT colonoscopy is not as much sensitive. Ulcerative colitis would be well expressed. 

    Best

    VG

  • Georges Calvez
    Georges Calvez Member Posts: 543
    edited June 5 #15
    Short versus long term effects

    Hi there,

    I would consider the short term side effects more than the long term effects.
    The first are moderately predictable insofar as you will suffer from at least some of them unless you are very lucky.
    The long term ones are less predictable, and you may dodge them all.
    As JM Keynes said 'In the long run we are all dead'

    Best wishes,

    Georges