Prostate Radiation

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I have started radiation for prostate cancer. I am working with 4 doctors all of whom feel I will achieve a good outcome.

One of the advantages of radiation compared to surgery is less significant side effects.

However, as the daily treatments progress there side effects are fatigue (highly likely), urine urgency or retention and diarrhea or constipation, all less likely but percent varies.

So far no side effects after 9 of 45 days.

I am wondering on this forum if there are any members who had radiation and experienced any of the urine or bowel side effects?

 

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I had surgery, then followed up with 35 radiation treatments for leftover cancer in the prostate bed. my incontinence worsened during radiation, whereby I was getting up 3 to 4 times a night, but i still was only using 1 pad a day. About 2 weeks in, I started getting severe stomach cramps and had diarrhea every day thereafter. Unfortunately, the digestion problems are still present 4 months after the end of radiation. My case is unusual, apparently, as the radiation oncologist denies the radiation was a factor in my digestive problems. Gastroenterologist disagrees and says my digestion problems may now be permanent. but, my stomach issues are not normal and I actually don't know anyone who has had the same problems 4 months after the end of radiation. But it is normal to have diarrhea about 2 weeks in. However,I've found that some people have no problems at all during and after radiation. Seems to be different for everyone.

 

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I had the same experience as Jim (above)After 6 months post radiation I became incontinent.
Had to have AUS Surgery. Now I'm drip free.

 

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Thanks for sharing. I did have one diarrhea a few days ago but feel it was something I ate. However I advised staff.

It is unfortunate when providers accuse each other. Often finger pointing between say a surgeon and anesthesia in regard to an outcome.

Your last sentence is important for all of us and providers to remember. Good luck in finding a solution.

 

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@DWLCPAJD I had radiation following surgery. It was difficult keeping my bladder full for the actual radiation. Between urgency and bowel discomfort it was hard waiting in the waiting room for very long. They always told me it wasnt that critical because it was so localized, but I continue to have problems.

 

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I have not had radiation but when I was doing my research and talked to a number of guys who had the various treatments I did hear of a number who have urinary urgency. One or two men in a local prostate cancer support group had proctitis and would pass blood from time to time. My neighbour who had a combination of hormone and radio tells me he cannot leave his house before 10am because of bowel urgency and he also has to get up several times a night due to frequent urination. My daughter's brother in law is a gastroenterologist and he advised me to go down the surgery route because he had seen so many men with issues in the digestive system as a result of radiotherapy. Hot flushes, fatigue and mood swings are well known side effects of hormone therapy but these often pass. I have not experienced any of these but do have urinary incontinence issues following prostatectomy. I sometimes regret my decision but then there are no guarantees with any treatment, some will do well and some will have ongoing issues. I guess it's a case of "pick your side effects". I know one guy who had brachytherapy which did not get all the cancer. He then had hormone but couldn't cope emotionally and then decided to go for salvage prostatectomy, always tricky. He now has a stricture, urinary incontinence and penis retraction to the extent that he cannot use an external catheter. You just don't when you start out on this journey. You seem to be doing well and I hope this continues

 

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Klew11:

On Monday I think I over drank! It was a close call! But we do understand why it is important to have a full bladder. However it is like setting us up to fail. Sorry that the problems have continued but at least there are quality supplies to provide protection if needed.

 

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HBrownlow:

Thanks for your he detailed info. It is best when we have choices. My surgeon, wife and I all felt while surgery is quicker there are in general more long term side effects.

 

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@DWLCPAJD thanks! Good luck with your treatment. Keep a full tank if you can!

 

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If I could do it over again I’d opt for the radiation. Best of luck to you.

 

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I had radiation therapy during the summer of 2019. I developed urinary incontinence as a result. I used adult diapers and pads for several years and then I found Men's Liberty. They provide a condom catheter which you change every 24 hours. If you put it on correctly there are no leaks and it gives me great peace of mind. I can sit through a movie or play and not have to worry about leakage. www.mensliberty.com.

 

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JosephC: Thank you. Too bad there are no do-overs once the initial path is taken.

Gwillie: That is a disappointing experience and likely an outlier in the spectrum of radiation side-effects. Glad that you have found a product that effectively works.

I suspect that quality physicians attempt to be truthful and make sure informed consent is given by the patient. However if everything was 100% disclosed some people may fear the cure more than the disease.

I remember an anesthesiologist friend said he wanted a sign in pre-op that says if you have eaten or drank before surgery you will die. It is very bad when patients aspirate during surgery of course but over dramatic probably is not good. I suspect he was frustrated from a recent event.

Hope everyone enjoys the Super Bowl this evening!

 

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@DWLCPAJD i think the cure has been way worse than the disease. Its incredibly unethical and dishonest for a doctor to not 100% disclose everything. Its not his choice to decide what I am willing to tolerate. And had I known everything I know now, I would have skipped the treatment.

 

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I would like to thank all who have contributed to this post.

An update: after a couple days of constipation on Saturday morning I had a small BM then a looser one. Happy to have bms but worried with second one since I was planning to do grocery shopping before my wife returned from trip. I decided I should wear a pull-up to be safe. Note that after reading this site and researching I chose the NorrhShore GoSupreme in black. Great staff and fast delivery. Good thing. Shopping was going well, last item at deli. I was talking to a friend while waiting and my GI did not feel good. But I thought I would be ok. Line at check out modest. I felt worse as going to car. An elderly lady was really slow getting out of her car, I could not get in mine. And result was significant leakage, by the time I was seated. However the product did its job. Pants and car seat were ok. Took shower and appear to be back to constipation now.

I discussed with the doctor and nurse today after treatment. Interestingly the nurse first assumed a urine accident, maybe because we have to drink so much before each treatment. She asked about urgency and feeling of pressure. Neither of them seemed surprised except maybe a little early in my course of treatment. So we decided no meds yet, just the usual lots of fluids, BRAT type diet, avoid carbonated and spicy, etc.

So for time being I will continue with the pull-up when out. Staff does not see them when I pull pants down and cover with the linen.

Random note, NorthShore included a lot of free samples including wipes, a pink pull-up! And a tie-die Megamax diaper which I assume is good when needed based on other threads but not what I would call discrete!

 

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@DWLCPAJD you should not be worried about what the staff sees. They have seen it all and are professionals. They should make you feel comfortable throughout your visit. I found that Metamucil before bed worked well for the constipation and got me more regular. Good luck!

 

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Klew11:

Thanks for the suggestion. I have recorded in my progress notes. You are absolutely right about the staff, they are great, I guess I was being discrete.

 

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Into week 3 of 9. No major side effects so far. Constipation perhaps most significant, urgency negligible.

They remarked the tiny tattoos today for better visibility, using black markers on hips and front, helps align the target using lasers on the walls. I suggested to the girl that she draws hearts. She laughed and said maybe even in read.

 

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I have completed 4 weeks of the 9. Overall I would say symptoms are mild. Many smaller BMs during the day, use the NorthShore wipes as needed. Some urine urgency but no major accidents. I have been applying Vaseline in my perineum couple times a day. Pull-up has been helpful for small amounts and not staining underwear. I do wake up 3 times a night to pee. Volume good. Couple times difficult to start. Met with radiation doctor and he says I am doing well. Continue with cranberry juice. If my symptoms get worse he would suggest some OTC remedies. Does not push prescriptions.

 

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I am just past two thirds of the way to completion. Perhaps fatigue has been increasing. Diarrhea has improved lately but a couple urine leaks the last couple days. Not experiencing significant pain or soreness or any bleeding. Staff says I am on track and doing well.

 

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After tomorrow morning I will have 1 week to go! Doctor continues to be satisfied with my progress. There has been an increase in urine incontinence which is now at least once a day. Doctor said gradual improvement likely over the next 3 months. I know have appointment with urologist 4 weeks after final treatment.

Two interesting stories: in one of the posts above Klew11 mentioned not to worry if staff sees my pull-up. He was right. Many patients ware something and staff doesn’t care. The nurse asked if I would give her a sample of my GoSuoreme to have if patients ask. I left her my spare from the car. Today she told me that within the hour, a patient asked about pull-ups and she was able to show him one, snd show the differences that I think make it better than store bought.

The second story is heart warming. A newer patient has been coming in with his wife and adult son. The son can hear and speak and interpret because the patient csn only communicate with sign language. The staff has been so kind and supportive, a saw a couple using some simple sign language for “good morning” etc.