Share this:
oldmottin

Bladder cancer

Posted by @oldmottin in Cancer, Aug 18, 2011

AT 85 AM WONDERING IF I CAN
TAKE THE PAIN! I HAVE BEEN ON
CHRONIC PAIN MEDICINES FOR
5 TO 10 YEARS> I AM A WIMP AND
WISH I HAVE THE GUTS TO CANCEL BLADDER REMOVAL!

Tags: Cancer

conchgma

Posted by @conchgma, Nov 16, 2011

I see this post was from back in Aug. Did you have the surgery and if so, how are you doing? My husband has bladder cancer also.

marylu

Posted by @marylu, Sep 27, 2014

just found out that I have bladder cancer. Have to return back in two weeks to have it restaged. By then, I hope to have some info. on treatments and their outcomes

boomba

Posted by @boomba, Tue, Apr 26 at 8:24am CST

Mary....I'm into a weekly bladder chemo wash or Bacillus calmette-guerin (BCG) therapy. My GP has now recommended that I get a second opinion from John Hopkins, which is close, I live in Annapolis, Maryland. My only problem now is fatigue. I do not have any pain.

This morning's Washington Post (April 26, 2016) has an extensive story on why getting a primary or second opinion from a prominent medical institution, such as Mayo Clinic or Johns Hopkins, is very important.

If you're interested I'll keep you advised as to my progress.

colleenyoung

Posted by @colleenyoung, Tue, Apr 26 at 8:49am CST

@boomba I think I found the article from the Washington Post that you referenced.

Do you need complex surgery? Some doctors may not have much practice.

https://www.washingtonpost.com/national/health-science/do-you-need-complex-surgery-some-doctor-may-not-have-much-practice/2016/04/25/186a8ce8-e30b-11e5-846c-10191d1fc4ec_story.html

boomba

Posted by @boomba, Wed, Mar 23 at 11:20am CST

Bladder cancer chemo....what side effects?

colleenyoung

Posted by @colleenyoung, Wed, Mar 23 at 11:47am CST

Hi @boomba, welcome to Connect.
I moved your message to this thread so that you can hopefully connect with other members like @marylu, @conchgma and @conchgma who also have experience with bladder cancer.

Boomba, chemo for bladder cancer can be given in a couple of different ways, and different drugs may be used. See this information from the American Cancer Society http://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-treating-chemotherapy

Do you know what type of chemo you will be getting?

boomba likes this
boomba

Posted by @boomba, Wed, Mar 23 at 1:39pm CST

Bacillus calmette-guerib (
BCG)

marylu

Posted by @marylu, Wed, Mar 23 at 9:16pm CST

 The day I found out about my conditions,  a dear friend was told that he needed his removed.   We see each other all the time and he is doi g great. If you wish, I will ask him if he is willing to talk to you.

colleenyoung

Posted by @colleenyoung, Wed, Mar 23 at 9:35pm CST

Hi @marylu, that would be great to invite your friend to Connect. Thank you.

@boomba, I found out a bit about the side effects of BCG from NIH.
BCG side effects include:
- Flu-like symptoms
- Severe allergic reaction
- Urinary side effects
- Pain or burning sensation during urination
- Increased urgency or frequency of urination
- Blood in the urine

You can find out more about biological therapies, including BCG in this fact sheet http://www.cancer.gov/about-cancer/treatment/types/immunotherapy/bio-therapies-fact-sheet

When do you start treatment?

boomba

Posted by @boomba, Sat, May 7 at 1:46pm CST

Just finished 6 weeks of Chemo Wash.....went to Johns Hopkins for second opinion......they said BCG probably will have little or no effect on the bladder cancer....going back to JH in two weeks. They will do an inside look to see what's going on.

rwcccone

Posted by @rwcccone, Sat, May 7 at 5:27pm CST

Hate to be a jerk,but many here are new to this issue,this bladder
cancer,treatments,etc. so please stop using initials for items.
Exactly what is BCG...Bladder Cancer...G? Help...Hugs...o

colleenyoung

Posted by @colleenyoung, Mon, May 9 at 4:26pm CST

Thanks for the update @boomba. By chemo wash do you mean intravesical therapy? http://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-treating-intravesical-therapy

How are you feeling after the 6 weeks of treatment?

boomba

Posted by @boomba, Mon, May 9 at 4:45pm CST

I feel fine.....just a lot of fatigue.....next step is going to Johns Hopkins for a second opinion.....I live in Annapolis, MD so it is only 45 minutes away.

rwcccone

Posted by @rwcccone, Mon, Apr 25 at 3:39pm CST

Six plus months,and nothing's been done to date. I am now waiting an appointment on May 2,2016 with Mayo Urology Dept. currently my rt. Kidney has shut down,my left kidney has tubes,and a stent trying to keep it flowing. I was misdiagnosed back in 12/20/2015,as having nothing more than a bruised bladder,then they said no cancer present. Apprx. One month later,after three requests they recheck their diagnosis,and they refusing to,tho I was an prior bladder cancer survivor,they then diagnosed me with highly invasive bladder cancer,with muscles involved,and since I've had nothing but one error after another. I'm wondering just how long can the body go without treatment for this. A PET scan recently done,last week,shows the cancer has reached the bone marrow,and still no real plans have been made for treatment. Am I just being left to die? We're not looking for promises,etc.,just some understanding,some outside thoughts. I'm 65 yrs. old! Otherwise,I was in good health until this. Thank you,Rodger

colleenyoung

Posted by @colleenyoung, Mon, Apr 25 at 9:11pm CST

Welcome to Connect, Rodger. I'm really glad you reached out.
I moved your message to this discussion thread about bladder cancer in the Cancer group to connect you with @marylu, @boomba and others.

I'd also like to introduce you to Sheryl M. Ness @smness. Sheryl is a patient educator at the Mayo Clinic in Rochester. She and her team in the Cancer Education Center help inform and educate patients, families and caregivers about services and resources to help them through the cancer journey. The Center is also a beautiful, calming place to relax between appointments. http://www.mayoclinic.org/patient-visitor-guide/education-centers/cancer-education/minnesota

Rodger, have you visited the Cancer Education Center in Rochester before? It's on the main floor of the Gonda building.

Ali Skahan likes this
boomba

Posted by @boomba, Sun, May 8 at 7:37pm CST

BCG……Bacillus calmette-guerin therapy……boy that’s a mouthful!!! Hope this helps…..

>

rwcccone

Posted by @rwcccone, Mon, May 9 at 8:21pm CST

To: oldmotion and boomba...I'm facing the bladder,rt.kidney,prostate
removal surgery on the 20th of this month at Mayo/Rochester,MN. I've
had a morphine implant in me for 20 yrs.,plus on a palliative morphine
tab. Care for another fifteen. I've survived six cancers,then this me
came and it's not looking good. However,my team at Mayo has given us
more hope for success than what we were being told. We're confident
they'll be able to get us thru this! Wishes,and prayers with hugs...

colleenyoung

Posted by @colleenyoung, Mon, May 9 at 9:01am CST

Hi @rwcccone,
Apologies about the acronym use. I usually pride myself on being the acronym buster (self designated). Earlier in the thread @boomba had spelled out BCG, but if you were just seeing the email notification you wouldn't have read that. As boomba points out Bacillus calmette-guerin therapy is quite a mouthful, so the acronym BCG is much more widely used. BCG is a biological therapy specific to bladder cancer. You can find out more here http://www.cancer.gov/about-cancer/treatment/types/immunotherapy/bio-therapies-fact-sheet

How did you appointment go on May 2?

rwcccone

Posted by @rwcccone, Mon, May 9 at 4:23pm CST

Colleen...My appmt. Was very surprising. Both my bride of 45+ yrs.,and
our two daughters came with us,both adults on their own. We all were
very impressed with the total degree of uniformity,organization,and
overall patient treatment from one division to the next. As for my own
appmt. It went as best as could be expected. The first thing our team
noticed is that my cancer,bladder cancer,was not only misdiagnosed,but
then pretty much poorly dealt with from one day,one MONTH,to the next.
So,several months have passed and I still have a basically untreated
cancer spreading within me! No surgery,no radiation,no chemo,nothing.
I am now fighting for my life,and thankfully Mayo is trying to come up
to speed as fast as they possibly can. I know this is a bit long but I
need to say things. Since my cancer was finally diagnosed my Dr.s
seemed to talk in terms of my survival,terms of how totally difficult
this surgery is going to be to survive,how serious it all is,even if I
do survive. We are pleased to tell you that we had some questions,and
we called our team,listing them. Within a matter of hours we got a
call back,the Dr. Or Internist that called did an absolutely wonderful
job of explaining things,covering our questions,even telling us while
yes this surgery is tough there's an excellent chance I will
survive,and that there might,I repeat might even be some alternatives
to the "total surgery" or different treatments available,not all this
death and doom my other dr.s seemed stuck on! Whatever happens,I want
everybody to know for once thru all this mess we've been given a sense
of hope! No promises,no guarantees,but a sense of hope! Thank you all
for that! We are to return 5/16/16 for further consult on the
17-18-19th..then if all is well surgery on the 20th of
May,2016...With several days of recovery,then a trip back home. My,our
daughters have purchased a hospital bed and set it up for us in our
living room. Im going to beat this! We are going to beat this even
with all the mistakes that have been made. This all makes no sense
that here we are six months later and I've still got this nasty
disease inside me...Hopefully,it's not to late. Our Mayo team seems to
feel we still have a chance..huuurrayyyy! Hugs...

boomba

Posted by @boomba, Mon, May 9 at 4:51pm CST

WOW…..you’ve had a tough go of it. I’ll pray for you.

nemo

Posted by @nemo, Fri, Jun 10 at 12:00am CST

Hi, new to the group. Just wondering why my uro doctor didnt do a bcg treatment after my turbt? Low grade .

colleenyoung

Posted by @colleenyoung, Fri, Jun 10 at 10:21am CST

Welcome @nemo! I moved your message to this discussion thread so you can meet other Connect members talking about bladder cancer. Please meet @boomba @marylu @rwcccone.

Here's some information on intravesical therapy for bladder cancer including BCG http://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-treating-intravesical-therapy

@nemo What is your treatment plan after your transurethral resection of bladder tumor (TURBT)? Do you know if the cancer has spread beyond the lining of the bladder?

nemo

Posted by @nemo, Fri, Jun 10 at 7:45pm CST

Plan is every 3 months a scope. Cancer was just in the lining no spreading. Doctor did remove a 2 inch tumor.

nemo

Posted by @nemo, Fri, Jun 10 at 8:04pm CST

I cant figure out why my doctor hasnt done bcg or any other treatments

boomba

Posted by @boomba, Fri, Jun 10 at 12:52pm CST

I will know more about my treatment plan next week when I go to Johns Hopkins for a second opinion. Thus far I've had 6 weeks of a chemo wash from a local doctor. Hopkins thinks that could have had no effect on the cancer.

rhafe

Posted by @rhafe, Fri, Sep 16 at 11:44am CST

I had five tumors removed that were cancerous. How long before I am back to normal, if ever.

nategilbraith

Posted by @nategilbraith, Fri, Sep 16 at 11:58am CST

Hi @rhafe, welcome to Connect. I moved your message to this discussion so you can meet other members already discussing bladder cancer. That's quite the operation you underwent. How long ago was this?

I'd like you to meet @predictable, @marylu and @rwcccone who may be able to share their post-treatment period experience with you.

predictable

Posted by @predictable, Fri, Sep 16 at 1:26pm CST

Hi, @rhafe. Sorry to hear about your bladder tumors. I'll give you the short version of my experience, and you can fill us in with more information on your own case, if you wish.

During surgery to remove excess prostate tissue through my urethra/penis, a small papillary tumor popped into my urologist's view from behind the prostate, so he snipped it off and removed it. The lab said it was malignant but not particularly aggressive and that it had grown up from the inner lining of my bladder, but had not sent roots down into the muscle of the bladder walls.

I was told to come back in three months for a cystoscope exam of the inside of the bladder. The exam revealed about a dozen more of the little tumors, apparently spawned by the lining (epithelium) of the bladder. I went in for ambulatory surgery under anesthesia, and they removed the tumors. I had no significant post-surgical symptoms.

At my next 3-month cystoscope exam, my urologist administered a BCG solution (named after a bacterium and a couple of French doctors). A total of six weekly injections of the solution (through my urethra) completed the therapy. Not much of a burden except for avoiding urinating as long as I could. The BCG solution apparently eliminated the seed cells for the tumors.

I have had periodic cystoscope exams over the past 5 years -- initially once per calendar quarter, then for longer periods. I'm now getting annual cystoscope examinations and expect them for the next four years. A friend with similar tumors is about 6 months ahead of me on the calendar; he's now expected cystoscope exams every two years.

Do you want to tell us more about your surgery and why you are concerned about full recovery?

rhafe

Posted by @rhafe, Wed, Sep 21 at 11:48am CST

My surgery was six weeks ago. my main problem is peeing. It is like a shower head in all different directions. My DR. says I have scar tissue that needs to be removed. He cut some of it out but I could not stand the pain, so I still have the problem. He claims there is no way to numb the penis or the urethra tract,

predictable

Posted by @predictable, Wed, Sep 21 at 12:37pm CST

Hi @rhafe. I can identify with your frustration somewhat! My urethra was damaged too during my bladder surgery, but I was not as scarred as you apparently were. I'm puzzled about "no way to numb the penis or urethra . . ." Mine is numbed for about a half-hour every time I go in for a cystoscope examination of my bladder. I can't feel the scope sliding through my penis into my bladder (except for a little catch when it passes my prostate). As to your shower head, I have a similar problem but resolved it by resorting to the commode for urinating sitting down. Nobody has yet threatened to arrest me for refusing to use the urinal in a public restroom, but these days, who knows?

rhafe

Posted by @rhafe, Fri, Sep 23 at 10:17am CST

How and what does he use to numb the area. Does he do this procedure in his
office? What I am worried about is the urethra blocking up completely.Did
yours get any worse or has it stayed the same. Thanks for any information.

predictable

Posted by @predictable, Fri, Sep 23 at 10:53am CST

@rhafe, I don't know what his nurse uses to numb my urethra, but I'll try to get an answer for that. The cystoscopy is done in my HMO's urology clinic a few doors down from his office. The nurse injects a liquid anaesthetic into the urethra's opening in my penis and allows me to whistle with Musac for 15 minutes before she calls my urologist in for the procedure. The original procedures were a TURP (trans-urethral removal of prostate tissue) done in surgery at a major hospital and a few weeks later (in 2010) a TURB (transurethral removal of bladder tissue) done in an ambulatory surgery facility. Gratefully, no significant damage to the lining of my urethra has appeared, although some scarring is apparent in my occasional shower-head urinating. I have had special consults about 5 times since then with my urologist over occasional blood in my urine -- always bright red, so it is arterial blood but not much -- and he has been mindful of that when he conducts a cystoscopy, slowly checking the urethral path visually on the way into my bladder. We're in agreement that the blood is from arteries in the prostate that were exposed to the tissue surface by the TURP, which removed about a golf-ball sized piece of prostate from inside my bladder.

I'd encourage you to maintain regular contact with your urologist, have regular cystoscopies to focus on your scars, and give him/her detailed descriptions of your symptoms every time you speak or go in for a cystoscope.

cweeks18

Posted by @cweeks18, Wed, Nov 30 at 4:41pm CST

I DID MY NAME IS CHUCK WEEKS, ON BLADDER CANCER, I CANNOT FINE IT ?

cweeks18 likes this
colleenyoung

Posted by @colleenyoung, Wed, Nov 30 at 6:08pm CST

Hi Chuck, welcome to Connect.
Can I help you find what you are looking for?
You can send me a private message by using this form https://connect.mayoclinic.org/contact-a-community-moderator/
Colleen

Please login or become a member to post a comment.