Idea For Everyone on this site......

Hi,

Sorry I missed this thread till now.

Hematuria screening for high risk populations is advocated now by the AUA; no, it's not cost effective to screen the whole population if there are no symptoms, it's been shown that only 5% of people with hematuria will have bladder cancer and something like 0.1% with no hematuria will have it.

The Society for Gynecological INvestigation reported that all the women diagnosed with bladder malignancy had hematuria.

We do have flyers and pages that are downloadable; if you check WebCafe's 'awareness and advocacy' section you can find these, and see that there have been a number of women working on bringing the news out:
blcwebcafe.org/awarenesscampaign.asp

also see our 'Women and Bladder Cancer" section on the main site:
blcwebcafe.org/womenandbladdercancer.asp

There are changes on the horizon; I promise you that.
Wendy

Karen & all of you,
I agree with you in that there needs to be an increase in awareness of the impact of bladder cancer. Everywhere I go this month someone is asking me to donate to breast cancer research, and I see signs and pink ribbons all over. I'm wondering how the breast cancer awareness got started? I think the lack of awareness of bladder cancer might have something to do with the lack of celebrities or famous people who got it and then came forward to do something about it. The same needs to happen with bladder cancer. We might need someone well known to come forward and talk about it before the word really gets out there. My husband was also given 2 courses of antibiotics from his internist that did nothing, of course, before he was referred to a urologist, who ordered the tests that eventually led to the diagnosis. The fact that he is male, white, 46 & a smoker should have alerted his internist, but it didn't. If the doctors don't know, how can the general public?
~Susan

Hi everyone,
     We do a urinalysis on every kid when he has his annual checkup. The urinalysis tests for other things besides blood. One could argue that it's not cost effective, but I've never had an insurance company refuse to pay for it. They may only pay $1.80, but it's really not an expensive test to run. The problem then becomes, what kind of work up do you do for microsopic hematuria? How many times must it be positive for blood before embarking on an evaluation? How much blood should be there before it's considered significant? I don't claim to have the answer. We don't see bladder cancer in kids, so it's an entirely different differential diagnosis when we find microcopic hematuria.
     How many asymptomatic adults do you think would agree to a cystoscopy just because there was some blood found in the specimen?
    With regard to treating with antibiotics, I repeat what I've said in several threads on this forum. The only reliable way to diagnose a UTI is with a urine culture. I can't understand why any doctor would treat a UTI without getting a culture since a real UTI might not respond to the antibiotic started at the time of diagnosis, and without a culture the doctor wouldn't have the information necessary to make the next therapeutic decision. In addition, in the absence of white cells, nitrite, or bacteria visible under the microscope, UTI is not even at the top of the list for causes of hematuria. This is not an insurance issue. This is physicians taking shortcuts because they don't have or take the time to think things through and thoroughly discuss them with patients.

Holly,

Thank you Thank you...I was trying to get my point across, and you did it perfectly!!! It should be a standard test for high risk patients.

I hope we can come up with something...I find myself talking to everyone from the telephone company to strangers at the grocery store! Anything to get the word out. I am a very pro-active person, I hate the fact that I cannot figure out a way to save my husband, but I cannot just sit around why this monster is lerking in the darkness waiting to destroy another family!!

Hi everyone,

Seems to me that I just recently read that bladder cancer is considered by insurance companies to be the most expensive cancer to treat - mainly due to the costs with lifetime monitoring. That suprised me - wish I could remember where I saw that.
I also read that the insurance feels it is not cost effective to give all a urine test when so few cases will be dx'd by it. SOmething about the cost per life saved doesn't justify the practice. Maybe Wendy is familiar with this and can hop in here.
Personally, I have asked each of my friends that is or was a smoker/tobacco user to go and get the urine test. Most people are not aware of the link between tobacco and BC. I do not know what these run at at primary care phys office.
I just think it is odd that our medical community recognizes that high risk sex or drug use should warrant an HIV test, that obese people need extra monitoring for blood pressure, diabetes and heart trouble. But tobacco users shouldn't be encouraged to get a urine test.? The system that flags for these things needs to be updated I believe.
Let me know if I can help advocate, write letters, what-not to help - Holly

Karen,
Bob has NEVER had any blood to show up yet.
He was treated for an infection of the prostrate, went back a few weeks later and was treated again, went for a follow-up and was told everything was fine.
During the mean time he had been sent to a spine specialist for the pain in his lower back and our family physician sent him for an MRI.
A mass showed up in his bladder on the MRI, nothing ever showed up in any x-rays, nothing showed up in his blood work. Some activity did also show up in his back but the spine dr. was 90% sure that it was not cancer and wanted to wait for 3 months to do another scan.
Bob had pelvic pain which he probably never told the dr. about and he had a lot of trouble with his lower back which has just been radiated.
Everyone seems to be different and I do feel sure that a lot of this does go back to the insurance companies not wanting to pay for tests but Bob has now had 4 PET scans this year and will have another one at the end of November.
Who knows?
Clara