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External beam radiation side effects

Steve1961
Posts: 301
Joined: Dec 2017

well most everyone knows me in my story. I am almost 21 months out of radiation therapy managing with these nasty side effects. So here's a new one about one week into radiation therapy I developed diarrhea. Had a lot of urgency couple months of rectal leaking but the loose bowelsAnd having gas never went away. I had a colonoscopy done no polyps thank goodness very small rectal burn and that was about it. Had a follow up to discuss bowel problems.Gastrologist suggested a sucrase breath test. I did the breath test and it came back not good. The average male is supposed to have higher than 3.7 mg of sucrase in their system I have 1.79. I am sucrose intolerant now I asked the doctor could this have happened from the radiation and he said that we cannot rule it out since it all started during that I need to talk to my radiologist about that well I know what he's gonna say no way but I'm convinced that the radiation therapy did damage to my bowels. The symptoms are not that bad just loose stools about 1 to 2 Bowel movements a day and I have gas maybe twice a week all day. Long story short the medication fir this is sucraid liquid 2 mL before every meal 1 mL before every snack a one month supply is $13,000 can you believe it this is absolutely disgusting all I could think of is what did I do to myself as well as taking Flomax twice a day

VascodaGama's picture
VascodaGama
Posts: 3234
Joined: Nov 2010

Steve

I am sorry to hear about your CSIDissue. Thought the sucrase-isomaltase enzyme lives at the small intestine far away from the PCa RT field of attack, the radiation treatment could have influenced the deficiency increasing the symptoms. Irritable bowel syndrome (IBS) is listed in the group of the side effects from RT but the most prevalent in PCa cases are the colitis occurring at the large intestine.

In fact, the gastrointestinal tract canbe disturbed by radiation induced diseases due to the high doses (Gy) in various cancer treatments. Gastritis (in the stomach), Enteritis (in the small intestine) and colitis (in the large intestine) are common. PCa patients need to certify initially about any intestinal issues before committing to RT therapies. Colonoscopy may not be enough for those that have had previous IBS issues. Unfortunately to you your prime doctor did not inform you properly on this matter and you were not aware of the full treatment risks. You surely have seen in this forum survivors recommending to the newbies to deeply educate on the matters related to prostate cancer diagnosis, details on options and consequences in treatments. The quality of life is always in jeopardy.

Your CSID case may relate to inflammation of the small intestine, which is typically caused by microbe contaminated food or drinks. You need to follow a strict diet to allow the growth of the enzymes. It will take time to get them back. The expensive sacrosidase medication will just fast track the growth of the enzyme population.

How are you faring with Covid-19?

Best wishes.

VGama

Steve1961
Posts: 301
Joined: Dec 2017

I had an iron gut before radiation treatment ..no problems whatsoever ever .strict diet ..like what .my Doctor just told me to look up foods high in sucrose and don't ear them .is that  the diet ..so is their a chance that this condition could get better 

 

Georges Calvez
Posts: 463
Joined: Sep 2018

Hi Steve,

I have cut back on sucrose and glucose.
I no longer eat high sugar cakes and desserts, I use fructose in my morning coffee, etc.
My blood glucose rose to the point where I was Type 2 diabetic under ADT, however with these refoms, a low level of metformin and now I am off the gear I am back in the normal range for HbAc1 and close to the normal range for blood glucose.

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3234
Joined: Nov 2010

Steve,

I am not a doctor but I think that the iron gut condition you describe above refers to microbial alterations in the gut which lead to iron-deficiency. The condition would not have been favorable for the timing of the radiation treatment. Iron is absorbed at the end portion of the small intestine (together with the duodenum area) and such situation should be taken into consideration by the radiotherapist when planning the field and direction of the radiation (isodose planning). I wonder if such information was passed on to the RT department.

Well, this matter is past history. You need to look into the future positively even if that is now more difficult because of the symptoms. At least you have managed to knock down the bandit as we see it in the decreasing PSA.

Best wishes for improvements.

VG

 

Steve1961
Posts: 301
Joined: Dec 2017

Iron gut is a slang expression meaning I could eat anything and everything with no problem what so ever perfect bowel movements almost always 

 

Clevelandguy
Posts: 590
Joined: Jun 2015

Hi Vasco, usually in the United States when someone said they had an iron gut it means they could eat anything with no heartburn if I am reading Steve correctly.  If not your explanation is a very  proper one.  Might be a Portuguese to US slang translation thing, LOL.

Steve if you ask my wife I have way too much gas just about everyday especially the couple of days I ate suger free chocolate chip cookies which I later found out had some compunds in then that cause gastro problems.  My wife & I still laugh about that one.  Watch sugar free foods for those additives will definently add to your gastro problems, I am a poster child for that one.  If you ever need a good laugh go to Youtube and type in Haribo sugar free gummy bears, you will laugh your a.. off.  Amazon reviews will make you cry.  Like Vasco said watch what you eat per your doctors advice and see if that helps.

Dave 3+4

MK1965
Posts: 200
Joined: Jun 2016

Steve,

As to having gas problems, that is related to what you eat. If you eat broccoli, cauliflower,  cabage, green liefs, green beans etc Vegetables are good sources of fibers and you now, fiber is indigestable so your GI tract is trying to digest it and produces more gas then other food. Also, fiber is causing stools to be bulky and easygoing. It happens to me to. When I eat steak, no gas at all but the fastest BM after steak is at least 48 hours away from eatin it.

As for iron deficiency, I hate to ask, are you consuming alcohol and how much and how often?

Alcohol is deplating your body of water, minerals, vitamins etc. On labs, Hg and Hct might look good or slaithly elevated but that is secondary to  dehydration . Did you check recently your liver function test LDH, AST, AGT, albumin, globulin etc.

Just my 2 cents.

MK

Steve1961
Posts: 301
Joined: Dec 2017

Be thankful you did surgery ..I would much rather have lost 5 inches and have no penis than to have to take flomax twice. a day and hsve messed up bowel problems now being sucrose intolerant and no even knowing if the cancer is gone ,,as for iron decifiency I said I had an iron GUT BEFORE THIS HELLO NO PROBLEMS AT ALL PLEASE QUIT TRYING TO MAKE ME FEEL BETTER ABOUT MY WRONG CHOICE not WORKING 

lighterwood67's picture
lighterwood67
Posts: 264
Joined: Feb 2018

Truly, hope that you are cancer free.  I think that you are.  The primary choice that we make should be the one that has the best chance of dealing the cancer a knock out blow.  Also, hope that you find a doctor that can assist you with blunting or eliminating the side affects.  I would venture to say that all of us will or have second guessed the choices we made because of the side effects. The primary concern for me has always been curative when it comes to the cancer.  Dealing with the side effects was secondary to curing the cancer.  You know my case: RARP 3/18.  PSA undetectable; fully continent; intimate with wife.  I did have to have a hernia repaired due to the surgery to remove the prostate.  In closing, I think your choice was curative for the cancer. You are having some significant issues with the side effects.  Good luck on your journey.

Clevelandguy
Posts: 590
Joined: Jun 2015

Hi All,

I know a lot of us have tried to talk to Steve and give him encouragement on dealing with his side effects to no avail.  He seems to want to use this forum to discuss his dissatisfaction with the course he chose.  Don't think we can help him with that, I know I will not give him any more encouragement as he does not seem to want it, only to vent his anger and not be glad he is free of cancer at this point in his life.  Good luck Steve on where your current attitude takes you in the future.  Hope you find some inner peace soon.

Dave 3+4

Flyer83948
Posts: 31
Joined: May 2019

Steve, sorry to hear about your recovery problems. As for regretting your treatment choice, you know what problems you're having with recovery with the treatment option you chose, BUT you don't know what recovery problems you may be having now if you had you gone with surgery. You seem to be assuming that everything would have gone smoothly with surgery and recovery from it but you have no way of knowing what might have happened. 

 

God didn't give any of us a crystal ball to know with certainty what the future brings. You studied the situation and made what you believed was the best choice based on information avaiable to you at the time, which is the best that anyone can possibly do in this imperfect world. 

Josephg
Posts: 229
Joined: Jan 2013

I agree with Clevelandguy, regarding efforts to help Steve get out of his longlasting funk and anger, regarding the results of his PCa treatment.

I have watched Steve's numerous posts with sympathy, empathy, and understanding, as I have experienced most of the side effects, some temporary and many permanent, as a result of my PCa treatments.  Along with many others, I have tried to assist in helping Steve move to a place of better internal peace and acceptance.  However, it does not appear to be working, and I find myself moving out of the empathy mode and into an annoyance mode when viewing Steve's posts, and that is not good for anybody.  This is not good me included, as I try to stay positive, and I rarely give up on trying to help anybody.

I do not know what else to say that would be considered positive.  I am reminded by the sage advice given to me by my parents at a young age:  If you do not have something positive to say, then say nothing at all.

Steve, I absolutely from the bottom of my heart and soul wish you the best of luck and success going forward toward reaching the inner peace that all of us PCa survivors need so much and most have already reached, that has allowed us to pick up the pieces of our lives that were so shattered by the diagnosis of PCa, and then move on forward in life in a positive and fulfilling manner.

Grinder
Posts: 457
Joined: Mar 2017

Steve... just my opinion... but you should vent as much as you want.

But... make sure you figure out WHY your procedure was wrought with complications. There have been many successful radiation procedures reported  in this forum... why was yours an exception?

This will help other cancer victims in the future avoid the terrible consequences that you are suffering. That may be of little comfort to you now, but it will be a credit to you and if your symptoms do improve after many years of recovery you can look back satisfied that you tried to help others avoid what you went through.

So what were the variables that made your treatment different than successful radiation treatments?

Was error in targeting an issue? Was that an equipment issue that caused the radiation targeting to burn rectal tissue? Was it the inexperience of the radiologist? What were his previous side effect records? There are several sites that do (Or used to) post the number of successful procedures by doctors and hospitals versus the frequency of side effects.

Also, did they use Space OAR hydrogel to protect the rectum by creating distance between the prostate and rectum?

Some of these issues may have been covered and I have not seen them... But the prevailing issue remains... WHY was yours wrought with side effects whereas others are more successful?

Railing against the procedure itself won't help any guys trying to decide whether to have radiation treatments or not. If it makes you feel better to vent, I get that and I don't blame you one bit. But to help other guys they need to know WHY it happened so they can avoid the same variables that put you in that condition.

I have long suggested the same to MK but he has never pinpointed what happened in his particular situation either. I suspect inexperience but cannot say for sure since I do not know his circumstances. Like you, he blamed the procedure instead of investigating what variables contributed to his side effects, ignoring the plethora of successful surgeries reported on this site.

From my experience, I still maintain... look for the most experienced surgeon /radiologist with the best track record available. Don't just take the "next guy up" in your Urologist's rolodex. Get with your GP and both of you do research on records and success rates versus frequency of side effects and causes. 

Yes, the next guy up needs the experience to get good at it... But why should it be you? 

And is the equipment at your nearby hospital state of the art. The DaVinci equipment has come a long way. Laparoscopic devices used to be a floor model robot that looked like a Robot from a 70s Sci-fi show. When I had my surgery, the device now was an multi armed octopus overhead that looked like something from the Matrix movie.

Long and short, I say go ahead and vent shaking your fist against the sky... But let's figure out why it happened, not just that it happened. You'll be helping a lot of other guys out in the future. After all, they have prostate cancer, and if you know anybody who died because they were not lucky enough to get treatment before it got out of hand, you would think those side effects are not so bad compared to the prolonged misery of death by advanced prostate cancer.

Even now... is it better to be a cancer survivor with side effects, or a bedridden cancer victim with an IV in your arm waiting to die while the staff makes you as comfortable as possible in your painful misery, or even just a memory with your name etched on a gravestone?

The latter two was my neighbor Paul, a super guy and great neighbor. When I moved into the neighborhood he saw me moving treated beams and brought his Bobcat over to move them for me. But he was diagnosed with late stage Prostate Cancer and treatments were unsuccessful that far along. He started out a healthy robust 70 year old who raised horse for racing. He just withered away and within a couple years he was bedridden with bedpans and IVs... in another year or so he was dead. Then Frances his wife sold the house. They moved out the hospital bed and all the hospital equipment they used to make him as comfortable as possible... at the same time they moved out all the trophies and cups his horses had won racing.

I have not seen Frances since she sold the house and ranch and moved to Florida. But Paul's grave is up here in Boone County. And I thank God I caught mine when it was still just Gleason 6. 

Grinder
Posts: 457
Joined: Mar 2017

Yes, it's from a Rocky movie, but:

"Let me tell you something you already know. The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward. How much you can take and keep moving forward..."

Steve1961
Posts: 301
Joined: Dec 2017

U r right I would like answers  but why ..li really don't need this radiologist anymore but I do need doctors ...sure I can question him ..the flomax use now because of restrictions it happened ..the radiation burn was neglect because I asked about space or and I was told I didn't need it .as for the bowels and now being sucrose intolerant he will deny it ..if I question the youthful ness and inexperienced radiation techs all that will do for me is get them nervous thinking I may sue them ..I believe this is why they r paying me so much attention now ...i mean not getting the handbook that explains the radiation treatment and all side effects and not being to,d of all side effects is grounds fir malpractice and like I said I need these drs now ...It sucks ..hope I at least beat this but after all this I just don't know ..it's hard to believe that a well known hospital like UCSF would keep a radiologist arpubd fir 12 years if he wasn't any good ..but then again I think he was use to dealing with patients that had relapses not primary treatment ...my mistake 

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