Radiation side effects after prostate removal

Posted by lavender560 @lavender560, Mar 14 9:45am

Hi - first time participant here. I’m looking for guidance or reassurance that my husband is receiving the best follow up care following prostate removal at Mayo Clinic. He was diagnosed with prostate cancer in December 2022 and long story short we weren’t happy with the urologists in our area and ended up having the surgery at Mayo in August 2023. Found another urologist who prescribed 39 weeks of radiation to get rid of the remaining cancer which had spread. My husband is 70 years old and prior to this was very healthy. Only a routine blood test revealed the problem with a PSA score of 46 (stage 4). Anyway he did fine with the radiation until around the 30th session which was January 23. He found he was unable to urinate and had a catheter installed, problem was a UTI. Unfortunately he has never been able to urinate without the catheter since then as every time it’s removed (longest time was 6 hours) we end up back in the ER and he’s back on the catheter with another or perhaps the same UTI and yet another antibiotic prescribed. The radiation worked but the side effects have made life miserable and I’m concerned his body won’t know how to function without the catheter if this keeps up. Has anyone else had this happen? Any suggestions? His urologist seems to have run out of ideas. I’m thinking perhaps we should ask for another opinion from the surgeon at Mayo in Jacksonville for his opinion also. Thanks for any help!

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sansman | @sansman | Mar 16 7:51am

I pretty much had the same problem, I continued to work full time having to self catheter up to 12 times a day on some days, UTI’s were a problem.
Ended up taking early retirement and having a Supra Public Catheter installed, kept it for 10 months.
I will tell you it is an inconvenience and the first couple of months I ended up in the ER when it clogged, even though my wife would “flush” it, but it gave time for my bladder and urethra to heal somewhat.
I still cath once or twice a week, you get to the point where you know when you need to do it.
I knock on wood every day and pray for total healing.
It’s a rough journey and I wish him all the best.
There is a ton of knowledge that can be learned from hear.
Good luck and God Bless

budisnothome | @budisnothome | Mar 17 8:17am

There are urologists that specialize in radiation caused problems. I have a great doctor/surgeon who has really helped me. I am near Minneapolis. Search your area. Good luck.

bens1 | @bens1 | Mar 18 7:37am

lavender560: it's a good idea to get another opinion but maybe you want to get another opinion outside the institution used as there can be natural biases. You can do a virtual meeting at Cleveland clinic as they also have a (palm beach location) or any other center of excellence.

Colleen Young, Connect Director | @colleenyoung | Mar 18 2:16pm

@lavender560, since your husband is already a patient at Mayo Clinic, I recommend getting a second opinion there. In this related comment @naiviv explains that her husband was treated for Radiation Cystitis at Mayo Clinic in Jacksonville https://connect.mayoclinic.org/comment/755453/.

You may also be interested in this related discussion:
- Are bladder isses normal after external beam prostate radiation? Tips?
https://connect.mayoclinic.org/discussion/effect-of-prostate-radiation/
- Anyone dealing with Prostatic Strictures after Radiation therapy?
https://connect.mayoclinic.org/discussion/prostatic-stictures/

How are you doing today?

butchethefireman | @butchethefireman | Mar 19 5:45am

I was having difficulty urinating also and after two weeks of very difficult starting and stopping my doctor recommended Flomax and it was like a miracle overnight. prayers

rokski | @rokski | Mar 19 2:31pm

I’m curious, has anyone experienced neuropathy and numbness in their feet and lower extremities after radiation? After surgery and two rounds of radiation I have had some of those issues.

russ777 | @russ777 | Mar 19 4:25pm

I had 38 fractions of IG/IMRT after an RP and BCR. I never had any urinary tract issues but did have to fight through some bad diarrhea during the 2nd 4 weeks of treatment. One thing that I think helped me avoid urinary issues is that there was a 8 month gap between surgery and start of RT. Most of that time was waiting for my PSA to rise to a level officially meaning BCR (0.2) but also some additional time while the radiation oncology team planned the RT, did my simulation, etc. So my urethra and anastomosis (where urethra was reattached to the bladder had a lot of time to heal. I was on ADT the last few months after my PSMA PET imaging to avoid further spread.

Hope he does better.