Pain and blood in urine post TURBT

5 years 1 month ago #56878 by sara.anne
Replied by sara.anne on topic Pain and blood in urine post TURBT
Really glad to hear that your doc is taking this seriously!! Please let us know what he finds.

Good luck

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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The following user(s) said Thank You: George9

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5 years 1 month ago #56877 by George9
Replied by George9 on topic Pain and blood in urine post TURBT
Yes, I had a turbt on 1/4. Went well, then two weeks later started bleeding. It is still bleeding, so went to doc. today and he said something is going on. He couldn't do a cystoscopy in the office because there would be too much blood and he wouldn't be able to see. So, I am scheduled for it in the hospital next Friday. A little nervous for sure.

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6 years 5 months ago #54110 by Jack R
Replied by Jack R on topic Pain and blood in urine post TURBT
Emmaline,

RE: post TURBT bleeding and pain

A wide range of experiences have been described here. I have had a range of post TURBT side effects. Your experience is not unusual in my experience.

Blood irritates and causes pain; internally they go together.

Expect turbt scabs to release between 10 and 14 days. Sooner or later, and over a longer span. Stress or stretching the lower abdominal muscles can cause bleeding post turbt (my experience) - climbing stairs, lifting heavy items, jumping etc can cause or increase bleeding during the healing period.

Not all biopsy sites heal at the same rate (says the doc) big sites take longer, more sites means a wider bleed time.

Most important (per doc) is the amount of blood. light coloration is expected. Tomato soup needs to be looked at. Large amounts of blood clots or inability to urinate needs to be seen now. (per doc) Your Doctor may have a different opinion on what is 'normal'.

When it bleeds, it hurts (for me)

Your biopsy report may provide clues as to how many sites were sampled, the size and the depth of the samples taken.

If, like many of us, including me, blood in the urine was the sign that sent you to the doctor, THAT bleeding can continue until successful action is taken to address the cause of the bleeding -thus some bleeding may be caused by the underlying disease process - it may be with you for some time.

Ask the doc about over the counter Pyridium or AZO bladder relief medication. It can help, as can staying hydrated and diluting the blood in the bladder. Pyridium turns urine orange and it stains clothing. Check with your doctor.

You will be seeing your urologist very frequently. If you are concerned about your care, or the ability to communicate, consider finding another urologist if you can. We all need someone we can work WITH.

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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6 years 5 months ago #54109 by sara.anne
Replied by sara.anne on topic Pain and blood in urine post TURBT
Is it possible for you to seek a second opinion? Seems as if you need to find a urologist you can talk to and who takes your concerns seriously.,

If you are near a medical school or a National Cancer Institute Cancer Center, those would be a good place to start.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 years 5 months ago #54104 by EmmalineH
Replied by EmmalineH on topic Pain and blood in urine post TURBT
Hi, thanks for your reply. I'm well aware of the medical aspects of the diagnosis, treatment and long term prognosis - I'm a Biology/Chemistry teacher with a degree majoring in Physiology/immunology/ pharmacology . What I'm kind of lacking in in is the knowledge practicalities of "right now". I've been really frustrated by his lack of communication. He did take a sample at my first follow up appointment 3 days post-turbt, and prescribed antibiotics at the same time with the assumptions that there would be infection. I queried the wisdom of taking them without an actual result of this culture - I'm very conscious of the global problems surrounding antibiotic overuse/misuse, but he dismissed my concerns. When the bleeding started much earlier than he'd predicted and was accompanied by agonising pain which didn't really seem to quite follow the typical UTI symptoms I called his rooms last week to ask again "is this normal, how long can I expect to bleed/hurt?", the nurse suggested I come back in. My 5 minute appointment set me back $100 and answered none of my questions. The urologist gave no answers about recovery time - just said it was different for everyone, took another urine sample and prescribed more antibiotics (after admitting that the first sample had showed no sign of infection) again without any actual culture results to support the prescription. He said that there was a small chance they'd perforated the bladder - and if the pain continued I should probably have a scan to check this. I asked why we wouldn't just do that now since if it was the case, I'd rather address it than throw antibiotics at something that had nothing to do with bacteria - and he bundled me out of his office. Really frustrated. I am in so much pain and now on top of it I'm panicked about why, rather than being able to relax and enjoy my positive news about the non-severity of the TCC they found :(
Has anyone else with a seeemngly straightforward surgery had pain and bleeding increase in this time frame (in the third week post surgery)?

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6 years 5 months ago #54099 by sara.anne
Replied by sara.anne on topic Pain and blood in urine post TURBT
Sorry to hear of your diagnosis....and your experience. Some people have no after-effects from a TURB and some do. It sort of depends on where and how he took the samples. Did your urologist test your urine for bacteria to see what was present before he prescribed the antibiotics? Sort of standard procedure.

Your diagnosis is about as good as it gets for bladder cancer. Assuming that the pathology report confirms the low-grade, localized diagnosis (and you should ask for a copy for your records) the most usual treatment plan is to have cystocopic exams every three months for two years, then every six months for the next three years, and annually forever. The "nasty little secret" about bladder cancer is that it has a habit of coming back, and you want to catch it early again if it does. It is very important to keep those appointments!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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