Addendum.
I am 14 months post RT. Today when completing urination I noticed some pinkish urine drops on the side of the pan, although not obvious in the urine. I did a dipstick test and the strip immediately went dark green for blood.
The urine did not have a bad odour and I have no irritation or urgency.
I would like to know if others have experienced similar many months after RT, and what the outcome and treatment were.
I don't want to be diagnosed with RT Cystitis but it would be preferable to a recurrence or bladder cancer.
Coincidentally, I had my 3-monthly psa blood test today and should have the results in a couple of days.
Dedalus
Hi all
It has been about 11 months since I last posted. I waited until my annual review.
The following is an update on my progress since 7 sessions of hypo-fractionated RT only. It may be of interest to those considering RT without hormone therapy, and possibly more specifically hypo-fractionated RT.
My urination returned to normal very quickly. My flow is good, and improved on what it was pre RT I don't have any urgency and don't get up during the night to pee. I can have 8 to 9 hours sleep without interruption. I never had to resort to Tamsulosin or Cialis etc.
Bowels-wise, that too has been normal throughout. There has been nothing untoward. I have had recent slight constipation, but I should be drinking more water and fluids.
I had my first year review (11 months post RT) this week
The following are my PSA stats:
13.136 - Feb 2024 last known psa before treatment.
19 Apr 2024 - Last RT (7 Hypofractionated VMAT) - no ADT
The Following are Calculated as 28 day or 4-week months.
PSA
6.11 - 5 Jun 2024 (47 days or approx 1.67 months or 1 month 19 days)
3.424 - 5 Sept 2024 (139 days or approx 4.96 months or 4 months 27 days)
3.04 - 23 Oct 2024 (187 days or 6.8 months or 6 months and 19 days)
2.563 - 28 Dec 2024 (253 days or 9 months and 1 day)
2.255 - 17 Mar 2025 (331 days or 11 months and 23 days)
In my region as in many others, I'm sure, reviews are done via a specialist nurse over the phone. It is not possible to meet with the oncologist.
I found that specific feedback is scant and all I took from it, is that I am making good progress because I am on a downward trajectory. When I asked how I compared, I was told my downward psa results were average.
As I have not had HT, I hope that my eventual nadir (possibly within the next 2- 3 years) will be at least 1 or even better at 0.5 or less.
I would be interested to hear comparitively from others who opted for RT with no HT as the stats are obviously quite different for those who have had HT.
Best wishes to all on your journey.
Dedalus
Hi Dedalus, I used to pass blood in my urine infrequently and in variable amounts from soon after RT until18 months later when it stopped, mine was caused due to the amount of radiation 75gy and that the bladder was targeted as well, I had Telangiectasia, often called spider veins, and generally harmless, other than cystoscopy, no treatment was required, and it cleared up by itself.
Eddie
Thanks for your reply Eddie. My bladder wasn't targeted, I had to go with a full bladder to help with the targetting.
I read online that 1 in 4 experience haematuria over the years after RT, so I wondered if others on here had also had this.
There is a potential for harm to the urethra after RT, but I will have to request a cystoscopy to rule out bladder cancer.
Hi Dedalus, my RT 20 x 3.75gy, was also done with a full bladder and due to bladder neck involvement, the bladder was targeted as well, which cleared every sign of cancer from the bladder, I also had frank haematuria twice, which looks a lot worse than it is, and ok as long as your able to empty your bladder, painful, and requiring medical help if not, urethral fissures are no longer a problem, so things are good 26 months post RT.
Eddie
hi i had 37 sessions of RT in 2018 six years later started get blood in urine bit shock at first but not alot , but 3 weeks ago had 11 hrs of blood in urine deep red .doc did lots bloods nothing shown , psa was way up from 8.1 to 26.7 rested last week still 26.3 after lots urine samples and blood them found bug in last one on weeks antibioctics )nitrofurantoin) quite strong so see what happend .due a turps operation next week but may put that back..john
John. Thanks for your reply.
I agree, it is a bit of a shock at first, and my slight pink drops of urine were far less than your experience.
Hope you knock this quickly on the head with the antibiotic.
Thankfully, my 'pink' experience has gone for now, and my home dipstick test is showing no blood.
D
decided not to do the turps ,postpone it as not good to have it with a UTI ,just get odd spurt blood when first wee but nothing serious and every few days , the urine is weird orange colour with these antibioctics , main side effect is not dissimilar to post RT severe fatigue dizzyness .im gleason 9 which isnt curable but keeping it contained for the moment ..john
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