EBRT 4 yrs. ago, now blood in urine

I had EBRT 4 years ago with clear sailing until two days ago.

There was significant blood in my urine with many clots. After
hydrating heavily everything disappeared for 36 hours but came
back this morning. Going to see my urologist in a short while.

I have read that this can be a long term side effect of the
radiation. Has anyone on this site experienced this or heard of
someone who has?

Barry

Post Edited (bachez) : 4/21/2016 12:59:39 PM (GMT-6)

Hi brachez,

Sorry you are experiencing this. Some men have these "late-term" side effects of radiation therapy (rather than "long-term") and others don't experience them at all.

"Late-term" implies it shows up later. "Long-term" shows up right away and lasts a long time. "Short-term" shows up right away then goes away rather quickly.

Hopefully, some of the guys who have posted of their similar experiences will also give you feedback, but good idea to contact your urologist any time new blood shows up in your urine.

good luck



BTW, you can go back into your original post and edit the SUBJECT by clicking the pencil icon in the upper right corner. You'll probably attract more readers if you add a relevant Subject; something like: "Late-term radiation effects? Blood in urine"

Post Edited (JackH) : 4/21/2016 8:30:18 AM (GMT-6)

Allen, it would be rare for me to dispute you, but I feel you are not correct in what you told bachez.

There are different levels of radiation related side effects. I have experienced, first hand, all 3 levels. I had immediate damage - from being burned, urinary retention issues. I had the next level that started showing up in the 2 to 5 year range, which includes, but not limited, to severe nerve damage, digestive issues, kidney bleeding. And now that I am 7 years out, it has produced intestinal blockage issues, rotted every tooth out of my head.

My doctors have warned me, that even greater damage is possible with me from the radiation when I start hitting the 8-10 year mark, if I live that long, including bladder cancer, other secondary cancers, and other organ related damage.

I know you have a lot of knowledge and research behind you, but in my very humble personal opinion, your posts come across as giving bonifide medical advice, which in my opinion, is both dangerous and could be a slippery slope. People here at HW should fully realize that they should be making medical decision based on actual medical opinions originated by their own doctors. Some here, unfortunately, come here and take our opinions as literal medical facts.

Barry,

Sorry to hear about the bladder cancer. Getting it early is a good thing.

and one shouldn't be peeing blood, ever. Good you got it checked out fast.

Keep us updated on your progress,
Andrew

Purg-

It is certainly fine for you or anyone else on a public forum to dispute me or anything anyone says, as long as the discussion is civil and there are no ad hominem attacks (which this is).

As you say, I am not a physician - I just read a lot, meet with a lot of patients, and visit and communicate with many physicians. When I make statements like I did, I have the data to back it up - I never shoot from the hip, as some might. Evidence-based medicine is important to me. I also stand for patient empowerment - the two are related: just because a doctor or patient says a thing is true, doesn't make it true. The evidence does.

Being human, we all have a tendency to overvalue anecdotes that we hear from other humans, and to undervalue and distrust statistics. Because of my 20 years of working with statistics, I see things differently from most humans. But I also know that statistics predict for the population, not any individuals, and there may be wide variations that there is no way of predicting.

Yours is a perfect case in point. You must know by now that your situation and reaction to radiation is far from the norm. I am indeed sorry that you have suffered so much. Possibly you have one of those (thankfully) rare defects of your ATM genes, or other such peculiarity that has caused an inability of your healthy cells to self-repair radiation damage. I really don't know what caused it, but I do know your situation is exceedingly rare. What would be dangerous, in my opinion, is if people, reading about your situation, kept away from therapies that might have been perfect for them.

- Allen

bachez, good advice to everyone to see your uro for blood in urine.

I had it in two brief episodes a week apart 2 years after my RT ended. Nothing since, and that was over a year ago. It's sure alarming to see that happen, and I went to my uro. He did a cystoscopy, and a CT scan urogram. Nothing found, so likely no issues and perhaps a radiation side effect. They did also find a moderately complex renal cyst, so I'm on follow up for that one too (annual scans to see if it changes).

Sometimes, as I'm sorry you encountered, it can be serious. So you're right, this is not to be ignored or assumed to just be some relatively benign side effect of PCa treatment.

All the best to you. That's a tough break.

I don't discount your feelings, but they are based on your own very special experience. That is exactly the kind of heartfelt, emotional post that has to be seen in the light of actual evidence to give visitors here a clearer perspective.

For example, when you state, "a lot of RO's seem bent on rushing scared men into SRT." The actual trend is in the opposite direction. See:

Declining trend in the utilization of adjuvant radiation after surgery

And when you state:

Purgatory said...
And the patient needs to solid case of progressive rises in post surgical PSA's to warrant serious consideration. We have had men that either wanted or thought they needed SRT because their post PSA went to .10 or slightly over. IMO, that isn't remotely high enough to entertain the inherent risks associated with radiation. Not stating this as medical fact, but instead, first hand experience.

That is, as you say, NOT a medical fact, but your own perspective based on your tragic experience. The evidence is in the other direction - the "wait and see" approach you advocate was actually tested in 3 separate major clinical trials and was found to be inferior to adjuvant radiation. In fact, one of the reasons for the high failure rate of salvage radiation was that patients waited too long. Evidence is now coming in that early salvage (PSA well under 0.2) may be just as effective as adjuvant radiation, and may prevent overtreatment.

When you say, "and the patient needs to solid case of progressive rises in post surgical PSA's to warrant serious consideration," you don't qualify that as your personal opinion, which flies against the medical evidence in some cases. For example, a patient with adverse pathology who has his first PSA at a detectable level is, in fact, an ideal candidate for adjuvant radiation. This is not my opinion, this is the AUA/ASTRO standard of care. However, none of these decisions are automatic and should be made by the patient in careful consultation with his doctor, acknowledging all the expected risks and benefits to the extent they are known.

I apologize to the OP for kidnapping his thread. Purg, if you want to continue this discussion, I suggest you start a new thread about it.

- Allen