Mayo Clinic Connect
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!
Liked by swingandamiss
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?
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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…
Liked by Colleen Young, Connect Director
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?
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?
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.
WOW…..you’ve had a tough go of it. I’ll pray for you.
BCG……Bacillus calmette-guerin therapy……boy that’s a mouthful!!! Hope this helps…..
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…
Hi, new to the group. Just wondering why my uro doctor didnt do a bcg treatment after my turbt? Low grade .
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?
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.
Plan is every 3 months a scope. Cancer was just in the lining no spreading. Doctor did remove a 2 inch tumor.
I cant figure out why my doctor hasnt done bcg or any other treatments
I had five tumors removed that were cancerous. How long before I am back to normal, if ever.
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.
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?
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,
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?
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