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Anyone dealing with recurring UTIs and bladder cancer? Concerned
I have bladder cancer that has not spread to muscle. I'm 77, diabetic with one kidney already lost due to urothelial cancer, and scarring in urethra from 44 rounds of radiation from prostate cancer 12 years ago. First 18 months of BCG were fine, although some UTIs. Last few months have been extremely painful and with lengthy episodes of UTIs. Most recently about six weeks of constant pain, urinating every half hour or so day and night, and blood/floaters in urine. Urologist said my urine tests didn’t show infection and to wait it out. Finally, cystoscopy turned out to be useless because with all the blood and inflammation, visibility was impossible. So even though my urine tests showed no infection, I was given antibiotics which eased symptoms within 48 hours. This has been a pattern where my urine tests show no infection when I obviously have one. With diabetes, one kidney and at age 77, I am very worried that this recurring problem could ultimately do severe damage. Anyone have any suggestions?
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@warren2632, dealing multiple complex, chronic conditions is a constant challenge. It sounds like preventing UTIs will have to be a constant for you too. Here's an article from Mayo Clinic that might be helpful:
- 5 tips to prevent a urinary tract infection https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/5-tips-to-prevent-a-urinary-tract-infection
@wohali @barondog @mrdee63 @gemdoc25 @jmcs have shared some of their experiences here:
- BCG and UTIs: Anyone else get urinary tract infections?https://connect.mayoclinic.org/discussion/bcg-and-utis/
Warren, has your care team come to rely on your symptoms to confirm infection and administer antibiotics sooner? What tips have they provided to help prevent UTIs?
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1 ReactionWell, I saw my doctor today, and they decided to discontinue BCG treatments due to constant UTI’s and other side effects. So their going to be starting me on a different treatment.
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1 Reaction@mrdee63 I am taking Hiprex at the recommended dose of 2 daily because I was getting a UTI after every treatment. This seems to be working.
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1 Reaction@colleenyoung
Hi Colleen,
I am in the same boat with recurrent UTI’s attempting to get through the 6 week induction of BCG treatment. I was researching the situation and believe the GAG layer of urothelial lining gets affected with BCG, making one more prone to UTIs, especially as the causative agent embeds in the urothelial layers making antibiotics difficult to eradicate the causative agent. There is a suggestion of placing a patient on a long term low dose antibiotic may help. But I wonder how that affects the success of BCG. There is also an oral vaccine called MV140 (Uromune) over 3 months that may help prevent recurrent UTI. AGAIN absolutely nothing on internet to say if useful whilst having BCG OR if contraindicated as it relies on an immune response. Does anyone have any suggestions or knowledge. My oncologist just tells me to ask my Urologist…who is away at the moment.
@janine1991
Hi Janine,
I have found taking a Urinary Tract Antibacterial, which contains Methenamine Hippurate 1g works for me as I was also constantly coming down with UTIs.
The most well known brand is “Hiprex”, but chemists often have their own brands which are identical.
The recommended dose is 2 daily, taken as one in the morning and one at night.
@mochat
Hi mochat,
Thankyou for that advice. I did consider this drug, but got freaked out when I read that the active ingredient hydrolyzes into “formaldehyde” in the bladder.
I now have appointment with Urologist this Friday. So will discuss options. I did get a email back from company that manufactures this new oral vaccine ‘Uromune’ or MV140. Helps prevent UTIs especially Enterococcus Faecalis . No studies done in regard to intravesical BCG as yet.
All the best
Janine
@janine1991
Hi, and thankyou for this information. Will check it out.
All the best xx
@janine1991, what did you learn from the urologist?
Hi everyone,
Urologist placed me on long term Amoxycillin & cranberry extract twice a day. Oncologist happy to proceed with BCG treatment. Had only got up to treatment 4, then 6 days later frank haematuria with clots +++. So treatment suspended. Coming up to 86 hours & unchanged. Urologist yesterday wasn’t concerned, said was reaction to BCG. . I thought medications like high strength cranberry & 2 meloxicam taken on weekend + long term antibiotic have potentially caused coagulation issues. Hb down to 107 but platelets ok., kidney function ok. & CRP was 49 last week but in normal range yesterday. Guess I have to wait it out, drink +++ Feel washed out. I would assume if still frank haematuria & clots next Tuesday, they will cancel treatment again. Longest BCG induction phase, 4 treatments in 8 weeks.
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2 Reactions@colleenyoung I had read that some infections, especially in older men, aren’t discovered in routine lab cultures, and require more time for the culture to grow. That turned out to be true in my case. I went through weeks of severe pain and difficulties while my urologist said I couldn’t have an infection because lab tests were always negative. Was told it could be the result of years-ago prostate radiation, cystitis, inflammation from BCG, anything but infection. I asked for the longer lab test and it turned out to be actinotignum schaalii. Was given 7 days of amoxicillin but asked for more and didn’t get any. Still have mild symptoms but wish I could grt a longer run of the antibiotics. I felt dramatically better with just two days of amoxicillin but I don’t think 7 days was enough.
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