Radiation causing constant urge to urinate and burning

Towards the end of IMRT x 28 I began to have issues. The care team always asked about "burning". It was so consistent that I suspected a conspiracy to make me tolerate the frequency, the urgency, the weak stream etc, etc, with: "At least I don't have the burning!" And then finally I got the burning.

For the first 3 weeks after ringing the bell the urinary issues got worse. Tamsulosin (Flowmax) in week two of treatment worked for the first few days and then didn't seem to help (although the last time I forget a dose was definitely worse). Next step was daily Ibuprofen - who knows if it helps. Next they put me on a 10 day course of the steroid dexamethasone - this definitely helped me... eat everything in the refrigerator and beyond. Lastly, two weeks after treatment they gave me phenazopyridine hydrochloride which turned my pee florescent yellow and stains anything it touches. I've been sitting down to pee more and more frequently and with the cool, all-staining urine, now I only stand to pee in urinals and once or twice daily at home as an optimistic test.

My radiation treatment went so well that I felt I should be 100% 'cured' the moment I rang that bell. I'm okay with reporting that everything else improved immediately but the peeing got worse and worse. Finally, 4 weeks after, I think there is light at the end of the tunnel. I've surely figured out that drinking alcohol does not help, makes it much worse, and my nice night out yesterday led to a much worse night at home. Cutting back on drinking can't be a bad thing but I'm certainly not going to avoid it completely.

Good luck and don't despair about these issues. Things sound much worse for the RP folks. Treat it as a challenge to overcome for several weeks and hope, like I'm still hoping, that the end of the tunnel is near.

Also, I told very few people about my PC. After the bell I told a few more but most of my family and friends do not know. However I found it easier to tell people I had a urinary issue due to my PC treatment (if they know) or some vague 'medical treatment' (if they don't). Makes it easy to joke about your many trips to the bathroom. I'll say things like: "I'm going to the bathroom, see you in 20 minutes!" Don't suffer in silence and embarrassment. Good luck!

Hi @david2000, great place to post your message in a existing discussion related to your question. It also helps you to see what others have already posted on the topic of urgency related to radiation.

The sign of blood along with urgency and burning most definitely require medical attention and I'm glad to read that you have appointments tomorrow.

If getting a second opinion at one of the Mayo Clinic locations is an option for you, here is how to submit a request http://mayocl.in/1mtmR63

David, did you talk with your radiation oncologist when the burning first started?

@rtmcknight You are doing a disservice , in particular not telling your family about your condition - This secrecry will come back someday and bite you in the asse . I bet the vast majority on this forum informed their immediate family right away , and subsequently were helped by their concerns and everyday support . PROSTATE CANCER IS A FAMILY MATTER .
Picture the hurt and backlash when they find out you hid this from them . And they will . They will never trust you again or forgive you for your silence .
Additionally , again speaking for the majority on this forum . You are doing a disservice to your friends and associates . It appears you are ashamed you have cancer - Perhaps in your mind , it refelects on your manhood .
Embrace this desease and use it to educate your friends and associates , and perhaps save an extended family members or friends life .
I have become " AN ADVOCATE " for prostate cancer . I guide fellow travellers , from six countries , on their journey , referring them to Dr. Patrick Walsh's book " Guide to Surviving Prostate Cancer " plus Dr. Mark Sholz U Tube Videos and other forums . I have well attended seminairs in our local library . Like so many 1st time posts on this forum , it is a kick in the gut to be told you have cancer . They don't know where to turn -- They are in panic mode .
Several of these members , of this club which nobody wants to belong , have educated them selves to become their own best advocates , and now ADVOCATE OTHERS . It a case of spread the knowledge and save others lives .
Think about it .

I usually (always?) limit my posts to comment on my own personal experience.

At first I assumed yours was well intentioned and you are entitled to your self promotion. But it was quite the lecture. I don't like to be told by a stranger that I am "doing a disservice" when you know nothing of my circumstances. Did you know, for example, that all of my family live on a different continent? Did you know that my mother is 92 and I'd like for her to live on without worrying about my health. You don't know that I work remotely and that most of my close friends live in different states. You don't know who came with me on bell day and have been a fantastic help through this.

I am not ashamed of my prostate cancer in any way. Why would you say that? Why would I write comments here? I told the OP: "Don't suffer in silence and embarrassment."

Due to my particular circumstances, there are people I love who cannot help me in any way and I personally feel that they do not need to carry the burden of knowing. The people who need to know, know, and I take one for the rest of the team. You do you.

Going forward I'll be happy to not bother spending time adding my 2c. I can now confidently leave it to you to opine on everything, especially since you speak "for the majority on this forum".

It sounds like you're having a tough time, and of course, you don't want to feel like you're being lectured (even if that wasn't someone's original intention).

My own experience is that sharing my stage-4 cancer details with family and friends (including my then 80-year-old mother) was really tough at first — heartbreaking, even — but eventually turned out to be a positive experience. I learned that people loved me unconditionally, not just because I was strong and helpful, and that was one of the few actual gifts cancer has given me. It's also been important to them (both remote and nearby) to be on this difficult journey with me since 2021.

Of course, everyone's experience is different, but if you do see an opportunity where *you* think it might be appropriate to share with the people you love, I think you won't regret it.

Best of luck, whatever you choose.

@rtmcknight Quite a comeback . I can tell you don't like critism of any kind -- Well intentioned or otherwise .
The smartest pencil in the toolbox .
I have had others on this forum challenged by not being open with their extended family. There response was positive and relief after including them in their journey . Each to his own I guess .

No, I'm not having a rough time.

In the six months since the post on which you are commenting, the urinary issues I mentioned have largely resolved. Fourteen more months of ADT sucks but I can take it. The side effects are no fun but I am secure enough to actually enjoy my enhanced (but temporary) feminine side and I can easily joke about that and my chemical emasculation with a select audience.

Some members of my family had a need-to-know due to my CHEK-2 mutation and happily they have all had good results from genetic and PSA tests (which are less routine where they live). A few additional friends know as a courtesy. I have had superb support from my core group of friends and colleagues. Despite all the doctor appointment, tests and scans, I did not miss a single day of work since I was diagnosed fifteen months ago. I've travelled domestically and internationally ten or more times. PC treatment is tough but I feel that I have maintained a positive mental attitude throughout.

I appreciate your immensely more polite response but I do feel that the other poster is doing the real disservice by telling people how to manage their disease and that you have unfortunately bought into his incorrect analysis.

It sounds like you're having a tough time, and of course, you don't want to feel like you're being lectured (even if that wasn't someone's original intention).

My own experience is that sharing my stage-4 cancer details with family and friends (including my then 80-year-old mother) was really tough at first — heartbreaking, even — but eventually turned out to be a positive experience. I learned that people loved me unconditionally, not just because I was strong and helpful, and that was one of the few actual gifts cancer has given me. It's also been important to them (both remote and nearby) to be on this difficult journey with me since 2021.

Of course, everyone's experience is different, but if you do see an opportunity where *you* think it might be appropriate to share with the people you love, I think you won't regret it.

Best of luck, whatever you choose.