Study: Bladder cancer patients get 'crummy care'
July 11th, 2011
12:00 PM ET

Study: Bladder cancer patients get 'crummy care'

Patients with aggressive non-invasive bladder cancer aren't getting the care they need, according to a study published Monday in the online journal Cancer.

Researchers at UCLA's Jonsson Comprehensive Cancer Center found 99% of patients with high-grade bladder cancer that had not reached the muscle weren't getting the recommended follow-up care.

According to medical billing records from 4,545 patients, only one patient got the recommended cancer care says Dr. Karim Chamie, lead author of the study.  He says he considered every recommended treatment regimen and was very lenient and inclusive as to how doctors interpreted specific treatment and surveillance options.

Chamie says it's not a surprise to experts that bladder cancer patients get "crummy care." Dr. Stuart Wolf, a urologist and chair of the practice guidelines committee for the American Urology Association, agrees that not enough is being done by urologists, but he says "the article overstates the degree of noncompliance."

"There is something wrong, whether it's a patient factor, or whether it's a doctor factor is unclear," says Dr. Nicholas J. Vogelzang,  chairman of the Cancer Communications Committee of the American Society of Clinical Oncology. He suggests some urologists aren't taking this type of cancer diagnosis seriously and neither are their patients.

"Urologists have to be more vigorous and enforce their guidelines more," he adds.

Dr. Gary D. Steinberg, who specializes in urology oncology at the University of Chicago Medical Center, agrees. "You've got a significant unnecessary death rate from bladder cancer due to our lack of following well established guidelines."

Although he sees that some urologists are improving their follow-up, says Steinberg, he finds the majority are all over the place with their treatment practices. He believes the health care system in the United States is also partially to blame. "I really do think the overall reimbursement rate to take care of bladder cancer patients is not sufficient."

The study suggests patients need to be more actively involved in their treatment plan. "This is a cancer - if it's high-grade, that has a very high risk of progressing to invasive disease, which can affect your quality of life," says Chamie. "It is up to you the patient to take ownership of your cancer diagnosis, to arrange a strict surveillance and treatment schedule because at the end of the day it's the patient that has to live with their cancer diagnosis."

Wolf says patients should always be questioning their doctor about what's being done and why. "We definitely want to empower patients," he adds. Steinberg suggests patients refer to the Bladder Cancer Advocacy Network for more information.

Dr. H. Barton Grossman, deputy chairman of urology at the M.D. Anderson Cancer Center, also believes, like the AUA spokesman, that the study overstates the number of patients who don't get the proper treatment.

"It's good that they raise the issue but it's not as bad as they say," he says. Grossman, who was not involved in the study, suggests that urologists and patients need to be better informed but that "it's not 99% of the population not being adequately treated." He believes the number is more like 25% of patients and he acknowledges more needs to be done to educate doctors and patients with this prognosis.

"There are different sets of guidelines out there," says Grossman and it can be confusing because none of them are completely the same. Grossman is referring to guidelines from the American Urology Association, the European Association of Urology, and the National Comprehensive Cancer Network.

The study authors suggest the standard guidelines need to be more clearly defined and adhered to.  They suggest they should include:

– Check-ups every three months
– Injecting a cancer-killing drug directly into the bladder
– immunotherapy called BCG
– A cystoscopy (looking at the inside of the bladder & urethra with a scope)
– A urine test to look for abnormal cells

soundoff (451 Responses)
  1. Richard

    Sure, because it's not a women-exclusive problem. Plenty of cancers kill a lot of people, like testicular and bladder but NONE of them get the funding breast cancer does. It's like the over-funding of AIDS research. Pandering to special interests.

    July 12, 2011 at 09:03 | Report abuse | Reply
    • JLB

      Testicular cancer doesn't usually kill. Most people with testicular cancer die of something else before the cancer gets them.

      Although I do agree that breast cancer and cervical cancer risks are exagerated. I actually find this a disservice to women who may have treatements they don't need. Studies are starting to show that focusing so much on finding these cancers is leading to women being treated for lumps that may have been benign. I am sure that some women have been saved by the screening, but the question is how many were saved compared to how many were treated unnecessarily. I wish I could find the links now...some UK medical schools had some great seminars/articles a while back.

      July 12, 2011 at 09:43 | Report abuse |
    • CNNUser

      It's not because it affects men and women evenly. It's because of the number of cases.

      From the American Cancer Society – for 2011
      Estimated number of newly diagnosed breast cancer cases – 232,620. Estimated deaths from breast cancer – 39,970.
      Estimated number of newly diagnosed bladder cancer cases – 69,250. Estimated deaths from bladder cancer – 14,490.
      Estimaged number of newly diagnosed testicular cancer cases – 8,290. Estimated deaths from testicular cancer – 350.

      The more people who are affected the more likely a researcher is going to be interested in researching the problem and the more likely they are to get funding. People are more likely to donate money to a cause and to pressure their representatives to fund research if they have been personally affected or know someone who has been personally affected by the disease.

      July 12, 2011 at 11:45 | Report abuse |
    • markglicken

      ....another attempt to hose the taxpayers for more money spent on medical care. Oy Vey.

      July 12, 2011 at 22:51 | Report abuse |
  2. Bosko

    You've got that right. Special interest have screwed the whole system up. Squandering millions on aids "cures" that will never happen and continuing to spread the disease instead of quarantining. All that money would be better spent on diseases that can be cured. In the end, Political Correctness will do humanity in.

    July 12, 2011 at 11:21 | Report abuse | Reply
    • Justin

      I agree here. . . these cures will never suffice. Alternative treatment methods such as medical marijuana is the best way to approach treatment. Place like dispensary store fronts and websites like http://www.kushpon.com really help patients in need.

      July 14, 2011 at 14:54 | Report abuse |
  3. LucyRicky3

    Now the doctors want us to be engaged! Before they told us to quit looking up stuff on WebMD!! Now they want to put the ball in our court! Between the doctors and the insurance companies' gross profits you can see how this has spiraled out of control! There is one honesty in the article regarding men and women. Because of birthing children, women are much more likely to seek early prevention scenarios – men are their own worst enemies. Mr. Macho Man doesn't want to go to the doctor enough and by the time they do find something it's too late. One more thing – when you do seek early detection scenarios the doctors are not inclined to seek them out. Simple blood tests seek out cancer at an early stage but just try to get the doctors to prescribe blood work! They wait until there is a problem and then they say – " look at this lab work – you have CANCER!. Early detection is the only answer to this horrendous disease.

    July 12, 2011 at 13:03 | Report abuse | Reply
  4. crystenj

    I had a cousin die of bladder cancer. He took initial treatment but it seemed as though everything that COULD have been done with that radiation/chemo had been done. He just managed the pain from there and died as a result of the disease. This article doesn't reference what the "guidelines" call for with regard to ongoing treatment, but maybe I missed something?

    July 12, 2011 at 14:21 | Report abuse | Reply
    • D

      Sounds like your cousin may have been diagnosed at a later stage than the early-stage patients referred to in the article.

      July 12, 2011 at 16:10 | Report abuse |
  5. Lung Cancer

    Being a cancer patient also means your treatment and follow up is almost a full time job. If your doctor is not being aggressive enough for you, you need to seek other care. Guidelines are one thing, but no one should ever have to feel that their case is not as important as any other.

    July 12, 2011 at 14:29 | Report abuse | Reply
  6. D

    CNN, we should be able to use the word s3x in comments medical articles!!! So irritating. Anyway, no need to quarantine anyone because of AIDS. It is not casually contagious.

    July 12, 2011 at 16:08 | Report abuse | Reply
  7. Notorious BJC

    How serendipitous that I see this on the one year anniversary of my father-in-law's death from bladder cancer. He fits the bills for this and it is sad.

    July 12, 2011 at 17:49 | Report abuse | Reply
  8. George

    I am a bladder cancer survivor. I had blood in my urine. My family Dr. had blood, and urine tests done. An ultrasound was done and I was sent to a urologist who specialised in Bladder Cancer. I had 2 TURB (trans uterial resections of the bladder) operations and I finally had my bladder removed (radical cystectomy) and a new bladder made from my small intestine. I am 3 years cancer free!
    I owe a huge thank you to the bladdercancersupport.org site for giving me the tools to take charge of my treatment.
    I had great care! I also know some who are gone because they didn't.
    So sad.

    July 12, 2011 at 18:28 | Report abuse | Reply
  9. Joe

    bladdercancersupport.org – is a must when a person is first diagnosed-it has all the information needed for seeking out the best treatments out there.

    July 13, 2011 at 08:04 | Report abuse | Reply
  10. Yoyo

    The unawareness with dr's and urologists, a simple urine cytolgy can detect cancer cell's in urine, or microscopic blood in urine through urinalysis. Instead of assuming it's always enlarged prostate for middle aged men, and prescribe Viaga and testeterone to mask real problems. Had Dr done a simple urinalysis at yearly exam, we may have caught bladder cancer earlier.

    July 13, 2011 at 08:48 | Report abuse | Reply
  11. Yoyo

    Bladder cancer and patient's that have had bladder removed. Where are the statistic's & reports of patients that "didn't" include chemo at all in their care, has anyone followed their outcomes? Why is chemo always the chosen standard therapy? It is so toxic, and most times prescribed repeatedly, sometimes eventually for the patient's lifetime. Can and does the body become chemo resistant, and comes back eventually with a vengeance? We need more research.

    July 13, 2011 at 09:00 | Report abuse | Reply
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    December 12, 2012 at 14:45 | Report abuse | Reply
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    December 12, 2012 at 15:07 | Report abuse | Reply
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    December 13, 2012 at 01:09 | Report abuse | Reply
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