UCLA Study: Bladder Cancer Patients Don't Receive Recommended Care

According to a study released today by UCLA’s Jonsson Comprehensive Cancer Center, the overwhelming majority of patients with high-grade non-muscle invasive bladder cancer do not receive the recommended treatment and surveillance, leaving them at higher risk for bladder cancer recurrence, progression, and death.

The UCLA study examined the records of more than 4,500 bladder cancer patients from across the country. These patients had high grade, relatively aggressive disease that had not invaded the muscle wall of the bladder. Of the patients studied, only 1 out of 4,500 received treatment that met all of the recommended guidelines for care as issued by the American Urological Association and National Comprehensive Cancer Network.

The Bladder Cancer Advocacy Network (BCAN), the first national organization dedicated to advancing bladder cancer research and public awareness, is not surprised by the study results, said Lawrence Rzepka, BCAN Executive Director. “However, we continue to be disappointed by the low quality of care and attention many bladder cancer patients are receiving.”

Read more about the study... http://www.sciencedaily.com/releases/2011/07/110711081417.htm

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19 replies. Join the discussion

This report affirms what we, in the trenches, have known all along. Urologists need continuing education regarding this cancer. BCAN's Medical Outreach program provides resources to Urology professionals. Awareness, sadly, is still our greatest need. One day, we hope, all Urology practices will join us in our fight for better treatment and greater awareness.
Karego

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Wow, how outrageous, not to mention frightening! This makes me angry. I suppose the best thing we can take from this is a renewed resolve to change it. Thanks for posting.

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This is truly sad. Women especially seem to not get treatment they should and often go years without proper diagnosis. This is a major reason for us all to support BCAN and their efforts with awareness and education. I wish that someday there would be lectures or some education for the general urologists, I know they must take continuing education courses, and they could hear some of the stories here. GP and internal medicine doctors along with Gyn need more education also.
Nancy

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I just don't get it. It doesn't make any sense. My urologist has worked with me and kept me going with all my parts for 9 years. That party is over and I hope a new one to begin in 2 weeks but assuming physicians are in business to make money something is missing. Medicare or not, nothing is done for free if there is someone to bill. Last I checked most (not all physicians) are among the brighter among us. Either this is a scewed study, some payers are doing something sneaky behind our backs, or I give physicians to much credit for their intellegence.

Marc

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Here is the link to the official UCLA press release: http://www.cancer.ucla.edu/Index.aspx?page=644&recordid=487&returnURL=%2fin dex.aspx

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Wow, this is very interesting, my hopes are that the Doc's will see this study. Sadly Matt's primary right now is the oncologist, he does share with the urologist, but given the fact that his neo is working well, the bone mets are the issue. However that being said its almost as tho the oncologist has given up. I sometimes wonder what this means (even tho we really do like him), is it money, is it lack of knowledge in this particular area? Being in a remote area it is difficullt to get 2nd, 3rd, etc. opinions.

Secondly, I would have to agree that women get the shaft (so to speak), my friend had to fight with Doc's for years, before finally being diagnosed by Dr. Mark Soloway in Miami. Thankfully she is cancer free now.

I will ask at our next appt. if Doc has seen this study.

In the meantime we are doing all we can to research and do the best we can to fight this. Take care, Teri@Matt

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Does anybody know what the specifics of the "guideline recommended care" are that is mentioned in the article?

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Bob7,

"The recommended medical guidelines call for injecting a cancer-killing drug directly into the bladder to minimize recurrence and progression. They also recommend an intense follow-up schedule, including the repeated use of a scope to evaluate the bladder from the inside, a procedure called cystoscopy, and a urine test that is similar to a pap smear every three months to check for abnormal cells. "

Translation: BCG or Mitomycin. Cystoscopy and urine cytology every three months.



Rick

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If there are no "abnormal cells", how often are the procedures repeated at the three month interval?

Are there long term guidelines?

When would the interval change to 6 months, 1 year, 2 years etc.?

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BCAN's official reaction here: http://www.bcan.org/wp-content/uploads/2011/07/BCAN-Release-UCLA-Care-Study .pdf

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So I guess my question is BCG considered a cancer killing drug? BCG is immunotherapy and from what I understand chemotherapy is the only way to kill cancer cells.

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What if your cancer is in the bladder neck, how do they administer chemo in their. I have a ostomy and had no chemo for my cancer. Jennie

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Jennie,

For tumors within the bladder, BCG or Mitomycin is used. For the urethra, it would not be effective as there would be inadequate contact.

The neck is likely covered as part of the bladder, but that would be a question for your doctor. I assume that you might not have had the option to have a neobladder due to tumor location.

If your cancer was high grade, then you should have had BCG or Mitomycin (if the cancer was not muscle invasive) unless you went straight to an RC based on your specifics and the doctor's recommendation.


Rick

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I had non invasive cancer dignosed last February. Two days later I had the cancer removed and Mitomycin treatment. I just had my 6 month check up- cystoscopy and was given the all clear. My next cystoscopy is in 12 months. I am in Australia and this is the normal prctice for non invasive blader cancer.

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From everything I have read on this site, I am glad I am where I am for my treatment. http://www.gucancer.com/
I think I also received excellent information from Moffitt in Tampa and St. Lukes Cancer Center in Kansas City.

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Rick, my cancer was CIS and was not muscle invasive and I was not a candidate for a neo bladder. Jennie

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Disappointed is mild, outraged would be a better reaction. ONE in 4500??? What is stopping docs from following accepted, recommended protocols? Do they not know them, are they not keeping up? Do they think they know better than the formulated care plans? Where is the bottom line here? It would not seem to be the best possible outcome for their patients? I am speechless at this study's findings. It is unfathomable!

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I'm angry and sad for all those who have suffered and died needlessly. From my few months dealing with it, and hearing the stories here, it's obvious that TCC is a menace, even if doctors follow recommended protocols. What's it going to take, litigation? Or would not following the guidelines even be viewed as malpractice?

Back at Kaiser for ongoing care after an awful surgical experience at the university cancer center, I am very, very thankful that my young urologist is being so cautious in his approach!

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I read somewhere on the net, a response to this shocking stat.
Please don't forget the many different variables that our physicians face. One of the most important being how the medical consumer is dealing with such things as Maintenance BCG. I've read that many men and woman simply cannot physically tolerate the full series of BCG maintenance. Would this large group of patients have been in that sample, thereby negatively skewing the stats if you simply look at protocol compliance? Important question, no?

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