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Blood in urine, no infection, having TURBT

(23 Posts)
val4 Tue 20-Aug-19 11:36:27

After many months of microscopic blood turning up in my urine samples ,I had a cystoscopy yesterday. Doctor said that lining of bladder is v red and inflamed and now need to have a biopsy done through a TURBT. He told me I will be in hospital for 4-5 days and need to come off Warfarin few days before surgery. I'm reading up and most information says that red parts indicates cancer! Has anyone had any experience of these tests? He also said he'll be doing Instillations of medication into my bladder ( through catherer) over few weeks. I'm reeling since yesterday as thought I had gall stones!

OP’s posts: |
Tanfastic Tue 20-Aug-19 15:57:18

I have similar to you, always seem to have microscopic blood in urine but frequent urine infections too. Had cystoscopy and was clear but I was told if you've got bladder cancer they can tell straight away instantly during the cystoscopy. To be honest I was so anxious during the procedure that I asked if they could see anything dodge and was told all normal.

Having said that the TURBT procedure and what you describe does sound like the treatment for bladder cancer although I do wonder if they use the same procedure for say to treat a deep infection?

I would be asking your consultant for complete clarification.

val4 Tue 20-Aug-19 18:48:14

Thanks Tantastic for your reply. During Cystoscopy he didn't tell me all was normal. He said bladder lining was deeply inflamed/ red and I would need a biopsy. He told me TURBT would entail a 4 night stay in hospital. He gave me lots print out of procedure including info on chemo etc. I was so in shock as I expected just to be put on 6mth antibiotics for an infection ( 8 years ago I had similar)!. I also had ct scan so am waiting for results of that.

OP’s posts: |
Tanfastic Tue 20-Aug-19 19:56:39

I'm not sure then, bladder cancer, apparently looks like little cauliflowers growing on the bladder lining. Did you notice anything like this on the screen during the cystoscopy? I did an awful lot of reading up on this before I had mine. Is this the first time you've had a cystoscopy?

val4 Tue 20-Aug-19 20:28:11

I had cystoscopy 10 years ago but all was fine. I did notice cyst like growths on monitor but dr was pointing out how inflamed and red the lining was. I'm on Warfarin for previous dvt/pe so I thought that's why it was so red. He said I need to have a biopsy under TURBT surgery but he spent most time discussing my coming off Warfarin etc., before surgery. I was bit stunned so couldn't ask him any questions. I'm waiting to hear from his office about dates etc. I just had cystoscopy yesterday so it still hasn't fully registered with me. He mentioned having Instillations for painful bladder syndrome (possibly Interstitial cystitis) , so I hope he is just ruling out possible cancer. But I'm just wondering why he needs to do biopsy through TURBT surgery and not through Cystoscopy??

OP’s posts: |
Tanfastic Tue 20-Aug-19 20:46:40

I'm not sure. I'm sure you've already googled but it just says a TURBT is usually either the first line treatment for early bladder cancer and it's normally to take a biopsy of an abnormality found during cystoscopy. I think your consultant should have made it a bit clearer rather than shoving a few leaflets in your hand.

It does say also that a biopsy can be taken during cystoscopy which is what I thought they did.

I'd be seeking clarification Val. Sorry you are going through this thanks

Tanfastic Tue 20-Aug-19 20:49:55

Wondering whether they couldn't take a biopsy due to the warfarin issue though? Maybe during the normal course of events they would have just taken it during cystoscopy but need time for you to prep before the procedure?

Nat6999 Wed 21-Aug-19 00:32:38

My dad had Bladder Cancer, he was diagnosed during his cystoscopy, he got told that he would need surgery & had the same op as you are going for, they removed all of the tumour after telling him that he could lose his bladder, the results were he had stage 1a cancer, he had 1 bcg treatment after he returned from theatre & came out of hospital 48 hours after his op, he had regular cystoscopies for 5 years & the cancer never returned.

val4 Wed 21-Aug-19 09:25:15

I'm hoping the reason he didn't do biopsy at Cystoscopy is because of being on Warfarin. He didn't say cancer....he said "inflammation " and that I needed a biopsy. I'm trying not to jump to conclusions but it's so hard not to, as you say Tanfastic, all my research on TUTBT indicates cancer being present! Thanks for your replies and Nat6999 good to hear your Father is well.

OP’s posts: |
Weenurse Wed 21-Aug-19 09:33:59

TURBT is Trans Urethral Resection of Bladder Tumour.
Tumours can be benign or malignant.
He wants you off the warfarin to prevent excessive bleeding with the procedure.
This biopsy will determine whether the tumour is cancer or interstitial cystitis, or something else.
Once it is determined what is the cause, then treatment will be decided.
That does mean waiting for the biopsy area to heal first, generally a few weeks to a month or so after a biopsy.
Good luck

val4 Wed 21-Aug-19 10:14:14

Thanks Weenurse for that summary...it makes sense. I will try not to let my brain jump to possible outcome of biopsy and just focus on surgery.

OP’s posts: |
Tanfastic Wed 21-Aug-19 10:32:17

What weenurse says makes perfect sense. My mind would be somewhat put at rest by that Val. I do think your consultant should have been more communicative though. I mean why couldn't have he just said that!?

val4 Wed 21-Aug-19 10:48:00

Tanfastic, he may have, but I was so expecting him say all was fine , that the details didn't register!

OP’s posts: |
Tanfastic Wed 21-Aug-19 11:33:50

Please let us know how you get on, I'm sure all will be fine 😊

Nat6999 Wed 21-Aug-19 16:05:26

Val4 My dad passed away in January from something totally unrelated to his cancer, but he survived over 10 years after his op. We were told by a nurse that many of the tumours years ago would have not been graded as cancer but as bladder warts.

val4 Thu 22-Aug-19 19:15:46

Sorry about your Dad Nat6999. My Consultant called me today ( I'm in Ireland and I am seeing him in a private hospital). He told me the ct scan was clear which is reassuring. He said that there were red patches on my bladder. I asked him if he thought it was sinister and he said he wanted to do TURBT to rule that out. He told me he would operate towards end of September as he knew I had family etc to organise ( and hopefully shows it's not too urgent). He said if all clear he will begin Instillations for Interstitial cystitis which should ease the inflammation.

OP’s posts: |
Tanfastic Thu 22-Aug-19 21:55:29

That sounds very reassuring 🤞👌👍🏼👍🏼

Weenurse Sat 24-Aug-19 09:25:31

Good news

royalton Sat 24-Aug-19 09:34:26

Message withdrawn at poster's request.

val4 Thu 26-Sep-19 11:21:46

Hi, just an update. I had my TURBT on Monday where urologist said he removed ' good chunk' of bladder lining. He said it was v inflamed and irritated and has sent it off. He said he is looking for Carcinoma in situ ( CIS) or Interstital cystitis, but on closer look he said it's more likely inflammation but won't know for sure for 2 weeks. I'm still in hospital as unfortunately had acute bladder retention so catheter back in. I'm also on bloodthinners( previous P.Es) so trying to balance that and risk of excess bladder bleeding. At least its over now and I'm trying to stay positive .

OP’s posts: |
Tanfastic Thu 26-Sep-19 21:26:36

Thanks for the update, let us know what the outcome is...all still sounds positive. Sorry you are spending so much time in hospital

val4 Thu 10-Oct-19 18:13:39

Met my Urologist today and he confirmed that biopsy was clear. I'm so relieved. However, he said the bladder lining is very red and inflamed and he recommended me starting a course of bladder instillations to bring down inflammation. He said I have Interstitial cystitis / painful bladder syndrome but couldn't say what's causing it. I'm still recovering from TURBT so wont be rushing into anything. I'm already on opioids for Chronic Pain, which does help symptoms/pain but I dont want to start other painful treatments. I'm so relieved that it's not CIS, so that's keeping me going for while😁

OP’s posts: |
nmg85 Thu 10-Oct-19 18:26:25

Good news, I have IC / PBS and the instillations aren't as bad as you think.

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