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!
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.
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
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.
@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.
Bladder cancer chemo….what side effects?
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?
Liked by boomba
Bacillus calmette-guerib (
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.
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?
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.
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
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.
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
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.
Liked by Ali Skahan
version 220.127.116.11Page loaded in 1.156 seconds