Improper bladder cancer treatment costing lives

You may not know it, but bladder cancer is the fifth most common form of cancer in the U.S. More than 70,000 Americans were diagnosed with the disease last year, and nearly 15,000 died from it.

New research shows a big problem may be that almost no one gets the recommended treatment, as CBS News correspondent Dr. Jon LaPook reports.

Six years ago, Adam Schaffer was enjoying Thanksgiving with his family until, he said, "I went to the bathroom, and there was a whole bunch of red. And it was very scary."

He was just 44 years old. The doctor's diagnosis floored him.

"He said you have bladder cancer," Schaffer recalled. "And you could feel the room spinning."

His first doctor removed the tumor but did not follow up with standard recommended treatment. Failure to follow guidelines is dangerously common and one reason bladder cancer survival has not improved in 25 years, says UCLA's Dr. Karim Chamie.

"If we were to get a report card based on our performance with these guideline measures, I'd say we'd be failing our patients right now," said Chamie, a uric oncologist at the schools' Jonsson Comprehensive Cancer Center.

Learn more about bladder cancer

For the first two years after finding early bladder cancer, doctors are supposed to test the urine for abnormal cells and examine the inside of the bladder every three months. They're also supposed to fill it with an anti-cancer drug at least six times.

But among 4,500 patients in a recent study, only one received that recommended care. And 42 percent of doctors failed to perform those tests even once -- the bare minimum.

"If we miss the boat we're going to lose them," Chamie said. "These are all potentially curable patients."

Dr Bernard Bochner from Memorial Sloan Kettering specializes in bladder cancer. He says it's unclear why follow-up is so poor.

"This is certainly not acceptable within the medical community," he said. "We need to do a better job, there's no question about that."

Schaffer says he's doing well now because he found a new doctor -- and the right care. He credits his new team with saving his life.

Bladder cancer that hasn't spread has a 50-to-70 percent chance of recurring. That's why it's so important to stay on top of it.

Over 25 years, bladder cancer survival has not improved. It remains the most expensive cancer to treat. It gets among the lowest amount of funding of all cancers. There's no reason why patients aren't getting proper care. The disease needs more attention, more advocacy, and better-educated doctors.

[daveLA3]

If your doctor isn't testing you for bladder cancer every 3 months like the article says, ask them if you can test yourself at home with this prescription home test: http://www.bladdercancerhometest.com

[cktirumalai]

To be diagnosed with cancer is always frightening. If on top of that, it is inadequately treated by a good(?) number of doctors, one is in despair. Patients can educate themselves (it seems a necessity these days) but a person afflicted with cancer has much else on his mind. Doctors are supposed to defend us from disease or cure us when they can but who is to defend us from unalert doctors?
It is news to me that bladder cancer is more expensive to treat than nearly all other cancers.
Candadai Tirumalai

[bon1nie]

Found the blip on bladder cancer information interesting. Found most of the comments to be extremely negative, but then those who have been hurt will obviously shout negatively.

My only problem with the blip is this: it is 'assumed' that bladder cancer is only a male-dominated disease. Maybe 30-40 years ago, but in the past 10 years we women have 'invaded' that domain.

As a female, non-smoker who was diagnosed with bladder cancer in 2006, I can attest that yes it is scary. And yes it came back every year until this year. I have been 'thinking', analyzing the various other "reports" I have heard in the past 5 years and I believe the key is having a comfortable relationship with your primary/gynocologist so when the early sympotms appear and the doctor recommends a specialist you need to trust your doctor. You need to be honest not only with the doctor but especially with yourself.

When the doctor says 'this treatment. . .' - 'see you in one, two, three months' you as the patient really need to follow through, to take responsibility even if you did not contribute to the existence of the disease.

In the meantime, positive (instead of negative) attitudes will over-rule when given the chance. After all, I am now 9-months cancer free from a grade-0 tumor that reoccured every year for 5 years.

Anyway, it would help to balance the gender-bias of cancer. Yes majority of breast-cancer occurs in women, but there is a minority of men. If men have prostate-cancer, then women have cervical/uterine-cancer; if men have cancer of the testicles, women have cancer of the ovaries.

Fighting over who gets the bigger portion of the (money)pie only garners slivers of said pie. Looking for everyone else to fund the cure without including yourself in paying said bills will never help garner a cure. I will continue to insert medical bills in my own budget without demanding my fellow working poor taxpayers to foot the bills.

[Grantu8]

My husband had bladder cancer, and had surgery to remove the tumors, plus he went back for 5 treatments, which was a live virus of Tuberculosis...and he still has one more to do. Fortunately no new tumors so far! It's pretty scary to think that "live" virus is being used, but it is safe when one follows the rules about containing the virus.

[erasmus111]

"It's pretty scary to think that 'live' virus is being used, but it is safe when one follows the rules about containing the virus."


Yes, it is safe "when one follows the rules". That's the problem, though, because there are many that just don't follow any rules. Some that just don't comprehend the rules.

My uncle has had this, and I have noticed that if my aunt doesn't understand something, she doesn't ask questions. And that is scary. I remember them going to my mom's house at Christmas, and my uncle using the toilet. That was BEFORE we found out about the 'Tuberculosis' virus. My aunt obviously didn't think it was worth mentioning. The only reason we clued in was because she told my mom how she had to be really careful when cleaning the toilet!

[GladderBladder]

My family doc immediately recognized the classic symptom of blood in the urine as a potential for bladder cancer and immediately referred me to a urologist who thankfully did perform the appropriate tests and resections and follow-up immuno and chemo therapies. I had 34 instillations of these drugs over 2 1/2 years as well as 6 transurethral resections of tumours. It still invaded the muscle and I had to have my bladder removed and a neo-bladder constructed. Life is good! Without the treatments, I would be dead! If your urologist won't perform the treatments, get a new one who will. It just might save your life - and your bladder! This is not a cancer to fool around with nor to have your urologist tell you you need no treatment. At the very least, get a second opinion.
www.bladdercancercanada.org

[kayleesanders]

I am an 11 year survivor of bladder cancer and I had a very large tumor that consumed 80% of my bladder. My older doctor in a small town in East Texas treated me with surgery, six weeks of the bladder infusion (a live tuburculin virus) for six txmts and 3 month cystoscopies for over a year and then every 6 months and now once a year and I am a healthy survivor. He didi tell me tho that I was the only patient he had had that had completed the entire protocol of txmt. I'm glad I did and I'm glad that he was as knowledeable as he was.

[Noval53]

If you want a cure and not just "dead" end treatment, get away from the American Medical Mafia. They are a business that's interested in $$$$$ treatment, not cures. The American Medical Mafia has no interest in any cure unless they can make a million dollars a patient. Stay far away from chemo. It's a high dollar slow & painful death sentence.

[shadeofafreeway]

You couldn't be more correct....and I'm sorry for your loss. I feel your pain. MD Anderson did absolutely nothing but placate and bill us. Lots of promises, zero treatment, lie after lie and HUGE bills because the insurance was paying at 100%!

[surf-glen-lake]

Asa practicing urologist, I was looking forward to this report. Unfortunately, the abject errors and mis-statements were disturbing. Dr John Lapook needs a refresher in bladder cancer. What this report will do is mis-inform patients who will callme and wonder why I didn't fill their bladder with an anti-cancer drug at least 6 times when, in fact, most bladder cancer patients don't need this treatment. What we do know is that 50% of certain bladder cancer patients initially present with incurable, metastatic disease-these patients will die from their disease. What I also know is that many patients choose to not follow-up with their every-3-month bladder checks and this is the best way to identify recurrence. Thanks for the mis-information

[AndyMis]

I know, right? Patients calling their doctor with questions. What a ridiculous notion that is.

[Survivor3years]

As a 3.5 year survivor of bladder cancer, I thank God daily for the treatment I received, as well as for my urologist & my oncologist. I would say that 'doctors ain't all bad.' At age 46, I had 3 months of chemo, followed by a neo-bladder procedure. Thanks to the chemo, they could not find any cancerous cells outside of the old bladder when they took it out. And as for docs being all about the money, I disagree there, too. After about 2 years of follow-ups, my oncologist said, "don't come back, I want to spend my time with SICK patients!" He knew I would continue to be followed by my urologist & said his services were no longer necessary.

[goffredo29]

Gee, I wonder why they don't follow up with their every-3-month checks. Could it be the draconian nature of the cytoscopies urologists perform--where they force a probe up your urethra, often without anesthesia. It's a legal form of rape. Oh, and has anyone noticed that the majority of these patients are men?

[T2survivor]

Wow...over50% of your patients present with incurable, metastatic disease and die! That's quite a statistic. When most are diagnosed at Ta low or high grade. Now if the majority of your patients are Ta low grade and considering you have done a TURB and have a decent pathology dept. Oh yeah..i forgot 50% of all tumors are understaged according to Memorial Sloan and if you talk to a few other major centers you'll get a higher amount. And a local uro sees how many bladder cancer patients a month..a year? How long does it take to get in to see you? I thought so.
In the case of bladder cancer one has to be their own advocate and always get a second opinion from a major cancer or Urological center. Many people cannot tolerate the BCG that is given for higher grade cancer that has not yet invaded the bladder but there are alternatives and the dose may be reduced per Dr. Lamm the authority on the subject.
I presented at T2 invasive bladder cancer because i didn't know the signs. Its not just blood in the urine..it can look like tea or coffee..i just thought it was something i ate? When i presented with gross hematuria i underwent a TURB the following week locally and then my brain cells started working and i scheduled a second opinion with Memorial Sloan. They pretty much saved my life by getting the remaining tumor out and clean margins that the local uro missed. I now have an Indiana Pouch (a female by the way) for the past 8 l/2 yrs and thank you to Dr Herr and Dr. Inderbir Gill...top docs!

[AndyMis]

Where to begin? Dr's complain about being too busy to remember all the details of a particular patient's care. Is it my fault that they schedule 75-80 patients to be seen in one day? My former urologist would not even sit down and talk to me during an appointment that had been scheduled for six months. He would ask me how I was doing; as I answered he would be looking at the information in my chart, refreshing his memory about who I was. He would then look at me with the "huh"? look on his face, as in, "were you saying something"? Then he would start leaning toward the door and make his escape. In the hallway he would hand my chart to a person standing there and say, "six months". All this, by the way, after I had had gross blood in my urine and two bladder scopes.

Anyone who is a regular person with no connections inside the medical community, prepare to fend for and advocate for yourself. As poorly as you will be treated by the doctors, you will be treated worse by the assistants who work in the offices. Try getting a phone call returned in the last couple hours of their work day. And after five o'clock? Forget it. Waiting for biopsy results? Good luck, at least if you live where I live.

Medical care is a business. It allows doctors to drive BMW's and send their kids to the best medical schools so the cycle can continue. You think I'm cynical? I have lived in my current area for ten years. In that time I have seen many doctors and specialists for some severe illnesses and concerning symptoms. In those ten years I have not once--NOT ONCE--had a doctor call me at home and ask how I am doing. Too high a standard? Okay, if you say so, doc.

[luzouzts]

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