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Newly diagnosed, had a TURB two weeks ago.

4 years 6 months ago #48368 by MHY
Carol, your statement "everyone is different" is so true! I was diagnosed with CIS in October 2014 and am so totally blown away with all of it: the grade, the stage, the treatments, the way each and everyone of us respond to the treatments. WOW! So much to learn. So far I have been very, very lucky. Maybe. I always say at any point in time I may be up next....

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4 years 6 months ago #48366 by carol58
Marble,

I have been reading your posts and your symptoms after your surgeries are very similar to mine. I had terrible problems with pain, bleeding and urgency for months. My doctor said I had a very "unhappy bladder" so to speak. My BCG treatments were put on hold for a month after my 2nd turb. I suffered terribly while undergoing the treatments. But here I am almost a year later just getting back to normal. My last cystoscope in January was still showing some irritation. My doctor has elected to wait until May for the next round of BCG. So it will get better. Just a question of when. Everyone is different.


Good luck to you!

Carol58
Diagnosed April 2014
T1 Gr 3 BC
2 Turbs
6 BCG treatments
The following user(s) said Thank You: Marble68

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4 years 6 months ago #48341 by Marble68
Yes, immediately after the surgery.

Like many have documented, after two weeks when things seemed like they'd be getting better, things reversed. Blood, pain, burning, frequency, etc.

When my Dr. told me he suspected I might be having a reaction to it, I read what other people have posted about reacting to MM.

They're descriptions were so spot on, in my gut I knew that what was happening.

I'm thankful I'm clear - and I'm grateful for this even if it is painful and embarrassing sometimes.

Some people are going through much worse.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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4 years 6 months ago #48339 by fighterm
Marble, I am glad that you had a good cysto result. Did you have only one mitomycin treatment? It takes time to heal. Hopefully you will be fine soon. Keep us posted.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 6 months ago #48337 by Marble68
So, here's an update.

I've had pain and blood for weeks now - urgency to pee, burning / stinging - etc.

It seems I'm one of those rare cases of Mitomycin reaction. Had another Cisto today - and it hurt like crazy.

Dr. told me my bladder is clear and is healing nicely where he took my cancer out. However, I had what he described as "angry" areas that look like bruises. In effect, the mitomycin did it's job and on me, it *really* did it's job.

I've got some pretty bad irritation going on and they're bleeding.

But he gave me tramadol and I'm thankful for it because I was really hurting bad.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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4 years 6 months ago #48314 by Marble68
Just an update as we approach 1 month since my surgery.

Still burning, still some pain. Very frequent urination and bright red blood at the end of my stream.

Moved some heavier stuff around yesterday, and saw the first bit of flesh I'd seen in some time.

I don't know why I'm still bleeding, but I'll just have to be patient.

My Dr. told me they took a chunk out - and I'm glad he went to make sure he got it all.

I slept more than 4 hours last night for the first time in a long time. I drank very little late in the day. So the sleep came at the price of extremely painful urination - but I was desperate.

I'm trying to hydrate like mad today.

My spirits are low and high. My doctor stressed that I'm in good shape and I'm not in a life threatening situation; which is good.

However, I am constantly mindful of my cancer diagnosis / TURBT. From the burning urination, to the stinging, to the pain when I sit down or stand up, to the constant urge to pee...

Today is the last day of anti-biotics for the phantom UTI. The Uribel made much more of a difference for me, but I can't take it forever.

So after today, I'll be on no medications related to this (just my cholesterol meds haha ).

Overall - I feel rather ok. I hope someday that going to the bathroom will be a relief, not painful necessity.

There is no other option but to press through the pain and endure it.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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