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blood in urine

redbelly7
Posts: 34
Joined: Jul 2017

Operation last year and finished radiation in December of last year.  Incontinent.  Had bright blood in urine 3 weeks ago, had CT w/ contrast.  Blood gone away, but I had some blood in urine yesterday.  Is this normal for this to happen after radiation?  I'm wary of having a catheter put in again, but guess it will have to happen.  After surgery and radiation, is it safe for catheters?
Thanks in advance!

Josephg
Posts: 165
Joined: Jan 2013

Hi Redbelly,

I had 3 occurrences of blood (lots - bright red) in my urine after radiation.  You certainly should have it checked out, though, it is probably due to the radiation treatments.

For me, I had a cystoscopy after the first occurrence, and my Urologist surgeon found the area, called it 'hematuria', and stated that it was most likely inflammation caused by the radiation treatments.  After the third occurrence, my Urologist surgeon performed a biopsy of the inflammation on the baldder wall, and the results came back as negative.  He stated that it will take time to heal completely, and not to be surprised, if I had another occurrence of blood in my urine.  Since then, I have not had another occurrence.

Be vigilant, but not overly concerned, unless advised otherwise by medical professionals (which I am not).

redbelly7
Posts: 34
Joined: Jul 2017

That is reassuring.  Did you have a prostatectomy or radiation alone?  I'm deathly afraid of a cystoscopy, but may have to do it.  Urologist in S GA said after all I've been through, he'd prolly sedate me for it, if needed.  I think I'm going to wait for a bit.

mtop
Posts: 18
Joined: Jan 2017

Have had same problem several times. Talked to doctor and also had cystoscopy. No sign of cancer just really scared up from radiation treatments (7) weeks. Mostly have blood in urine after hard bowel movement. It comes and goes, doctor said that it was / is caused by radiation treatments.

mtop
Posts: 18
Joined: Jan 2017

Forgot to mention, I had a prostatectomy and am also incontinent.Fot me I found that the the cystoscopy was not all that bad.

Best of luck.

redbelly7
Posts: 34
Joined: Jul 2017

I really do appreciate this.  I will let it go for awhile, but glad to know cysto wasn't that bad.  I'm prolly going to have a AUS put in and hopefully help w/ incontinence, but plan to wait a year, to see if I can go healthy for one year.  Plus I guess the plumbing has to heal from radiation.

Josephg
Posts: 165
Joined: Jan 2013

Hi Redbelly,

I had a prostatectomy first, and then had a combination hormone and radiation therapy protocol one year later.

I, too, was concerned about the cystoscopy procedure, just based on the mechanics of the procedure itself. In reality, my first cystoscopy (not the biopsy procedure), which was performed in a simple office visit procedure room, was TOTALLY painless, and not even really 'uncomfortable'.  I had no medications, except for a numbing agent that got squirted into the penis about 10 minutes before the cystoscopy procedure began.  My Urologist surgeon actually invited me to view the video monitor along with him during the procedure, as he moved the camera around the inside of the bladder, viewing the wall and looking for the source of the bleeding. There is absolutely nothing to be concerned about for the basic cystoscopy procedure (I know, hard to believe, without actually going through one yourself).

For the biopsy cystoscopy procedure, I was fully sedated, and the procedure was performed in an operating room.  I had no pain or any other unpleasant after-effects, following the procedure.

I also have had an AUS implant for 5+ years, and we can discuss that at the appropriate time, if you ultimately move forward with that option.

I wish you the best of success on your journey.

redbelly7
Posts: 34
Joined: Jul 2017

How long did you wait after radiation to have the AUS implant?  How do you find the best Dr for that?  I mean they are all going to say that they have done plenty.  I would like to know more about the AUS and if it has helped your quality of life.  I'm in GA, but willing to travel.  Thank you so much.

Josephg
Posts: 165
Joined: Jan 2013

Hi Redbelly,

To answer your question regarding the timing on my varoius procedures, I offer the following:  Prostatectomy - 11/2011;  AUS Implant - 1/2013;  Hormone/Radiation Therapy - 5/2013     As you can see, I already had my AUS implant, prior to my hormone/radiation therapy, as my prostatectomy left me totally incontinent, with no improvement for over one year following the surgery.

To answer your question regarding the selection of a medical provider, I believe that there are fully competent medical providers throughout the country, though some travel may be required.  I had my medical procedures performed at institutions in the Boston area, as they are highly ranked and reasonably close to where I live.  I am very confident that there are multiple competent medical providers in GA, and I ask other folks on this Forum to weigh in on your question, if they have knowledge of competent medical providers in the general GA area.  If not, there are Internet sites that rate and rank medical providers for cancer-related treatment, which could be helpful to you in finding a competent medical provider within reasonable traveling distance.  (For example: https://health.usnews.com/best-hospitals/rankings/cancer)  

To answer your question regarding medical provider competencies, this is a subjective area, involving both provider actual practice experience and results assessment and the patient-provider relationship and trust.  For my prostatectomy, my surgeon had performed over 2200 robotic prostatectomies, and the folks on this forum had suggested that a surgeon with over 500 performed robotic prostatectomies should be fully competent.  For my AUS implant, my Urologist surgeon implanted approximately 20 AUS devices per year for over a decade, and I made the personal decision that the Urologist surgeon was competent (and I had a great patient-provider relationship).  For my hormone/radiation therapy, my Oncologist with whom I have a great patient-provider relationship, gave me a referral to a Radiation Oncologist, and they teamed up together to draft and implement the combined therapy protocol.

To answer your question regarding AUS and quality of life, prior to the AUS implant, I had poor quality of life.  I could not leave my house and be 'active' for more than 2 hours, without leaking through my pad and onto my clothing.  Even wearing full Depends, I was limited to no more than 6 hours of activity.  For me, the AUS implant was a total game changer and restored my quality of life, as for me, mobility and being active are essential to my quality of life perspective.  As previously stated, if you decide to go with an AUS implant, I can provide you with additional patient experience-related information.

I wish you the best of outcomes on your journey.

redbelly7
Posts: 34
Joined: Jul 2017

Looks like i'll be shopping around for the AUS and will ask when it is safe to proceed w/ implant.  I need a game changer event.....

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