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1 year 9 months ago #54676 by exsequor

I had a lot of bladder pain after my first TURB. I even had quite a bit after my first cystscopy that discovered my 1.7x1.5x2.0cm LG/Non invasive BC Tumor (3 days prior to my TURB is how my story worked, but everyones is different - my young age they thought it was kidney stones at first due to a vascular phebolith that to this day could fool most radiologists into thinking it to be a kidney stone due to it's size and proximity to the distal left ureter.

Anyways my first TURB required stents for a month and catheter at home for a week. I had pain that whole time that was AWFUL, especially bladder and lower back for 3-7 days that had heavy bleeding and deep esepcially lower back pain. Then after stent removal I started to have terrible and worry some ureter pain that felt like passing a kidney stone. They did some more US scans and CT scans and found my lung bases all the way to my pelvis to be unremarkable and normal.

Anyways, I got back on alprazolam after that, and that took care of the ureter pain and the bladder pain once and for all.

I just had my first exploratory cystoscopy last month (4 months after my first TURB) and I didn't even have needle pain on my "first pee" after that scoping.

Then almost two weeks ago I had my second TURB, and it had been virtually pain free.

I, too, have nerve issues both caused by a massive (5"x3"x2" lipoma) located along R.H. Buttox where one of the sciatic nerves had grown into. That lead to a long term buprenorphine and alprazolam prescription for pain management.

I quit the alprazolam completely 3 days prior to my first instance of HEAVY hematuria. And stayed off until the ureter pain I was talking about became unbearable. Now I am prescribed it again.

ANYWAY, my point is not to get on xanax or any narcotic for your pain or any other pain that is not the solution. My point is that EVERYONE is different, and it can totally be mental, nerve, and physiological that can cause and contribute to pains that can be different for EVERYONE.

If you have any questions for me just ask me!

My surgery report never mentions anything like Chemo, BCG or Interfon flushed into my bladder after my first (or second TURB). if I remember, I'm going to ask my URO on tomorrow's pathology visit for this second TURB if he flushed my bladder with anything after either of these TURB's or not.

Anyways..good luck...sorry you, too, had to "join the club" and I pray and hope the best for you and KNOW this will work out for you and should only get better from here :)

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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1 year 9 months ago - 1 year 9 months ago #54672 by Jack R

Sometimes, after any bladder inspection or minor procedure, bending forward does result in bladder pain that resolves quickly. That pain can be referred elsewhere, but again I find it does not last long. Each of us may experience pain differently.

Hip pain could be a result of standing and walking differently, as you attempt to protect the bladder area pain. Or it could be completely unrelated. Same with upper body pain - changes in body mechanics can cause pain.

You mention vascular issues - do be sure to check with your primary treater for vascular issues for any changes that could be causing new problems. It is important to stay on top of all general health issues while going through a cancer workup or treatment.

I have prior nerve damage that causes me to "feel" pain, and I often cannot tell if it is "real pain" or "just nerves firing off at random". Continuing pain should not be ignored; see if your care team is familiar with the pain you are experiencing.


What's with this Bleeding ? 6/2015
DX: 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 :)
Until next scope :) :)

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1 year 9 months ago #54671 by mamalou1962
I have a question. Is it normal to hurt? When I bend over it hurts in my bladder. My pelvic bone hurts. The bones on -the only way I can explain it is my pelvic floor- hurt. One bone in my left leg hurts and my upper left arm. I don’t know if they’re related or not. And I am so wore out. I have no energy. I’m not just tired I have NO ENERGY. Vacuuming one room wears me out and I have such pain in my hips from it. Is all this normal? I don’t want to do too much research because I don’t want to think the worst or worry about ever ache and pain. However the exhaustion is severe and the pain in my hips and pelvic is almost unbearable.

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1 year 9 months ago - 1 year 9 months ago #54665 by Alan

Welcome. Yes, this a road that many on this board have walked and we are always sorry someone has a reason to be here but, glad you found us. First, slow down and realize this is treatable and beatable.

While a mass of the size you described may very well be cancer you won't know anything for sure until the TURB is done and looked at by a pathologist. I have learned not to jump to conclusions without the facts. By the way that is not a huge mass...from what I remember reading it is at the break point of "small" and "large: whatever that study meant.

The chemo your URO probably talking about is done after the TURB and instilled into the bladder as a wash to kill off any remaining cells. I had that done also.

Then the pathologist will report whether it is cancer, low grade or high and stage 0 to 4. Often if there is ANY question a repeat TURB is done. Yes, no fum but, that also happened to me. If low grade they probably will put you on a maintenance regimen of watching". If high grade it would probably mean BCG (please check this site for more on it) which is immunotherapy. It revs up your immune system and by 98% of us very doable and not near as bad as systemic chemo. Should it be stage 2 (muscle invasive) to 3 or 4 a cystectomy would probably be suggested. Obviously your URO needs to be in the loop with your vascular problems. Even to the point that involving a major bladder center or teaching hospital for a "team" approach such as Sloan Kettering, MD Anderson etc if warranted.

Let's not get ahead our ourselves and let's see what the TURB shows and path. Waiting is the hard part. Take one day at a time. AS away post any subject anytime. Someone will probably be reading.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 9 months ago #54663 by mamalou1962
My name is Danelle. I am 55.
I went to a kidney Dr because I have had one of three kidney functions test come back abnormal. The dr ordered a CT of kidneys to bladder. With in an hour I got a call about a mass in my bladder. 2.4cm X1.5cm X 2.1 cm. The next day I was at a Urologist. He’s already diagnosed me with cancer. I have a TURBT scheduled the 8th with first round of Chemo after the procedure. I don’t know if that’s normal or not! I think that’s a pretty good sized tumor. I have no clue if he thinks this is more than stage 0 or one. I’m just ... confounded. I don’t know what to think. Is this a normal way for bladder cancer to go? He said he can pretty much tell by looking at it that he’s sure it’s Cancer.

They didn’t find an issue with my kidney that I know of. I have a graft in my abdominal aorta. Long long story made short, the graft has a stent at each end to keep it open. Vascular disease killed my arteries. The graft if not allowing blood flow through it well effecting kidneys and iliac arteries.

I’m a mess.
I’m dumbfounded.
I think I’m looking for others who’ve walked this bladder cancer road too.

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