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Pulse Points of a Woman's World
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Female Bladder Cancer

By Sylvia L. Ramsey
Copyright 2006
Published: Medical Examiner, November 15, 2006
     

After a long, hard battle with bladder cancer, I consider myself
blessed that I am able to live a normal life that is cancer free.  For
those of you who have recently been diagnosed with bladder
cancer, “there is a life on the other side.”  Today I work a full-time
job as the coordinator for the GMC-Augusta Community College E-
Library, Speech Communication professor, and a published poet.  
My most recent collection is Pulse Points of a Woman’s World.  

Ever since I have been diagnosed with bladder cancer, I have
interacted with many women who have also had the same
experience as I.  Most of them have had negative experiences in
obtaining information or getting support.  Far too many were
diagnosed after the cancer had become invasive.  The more I have
interacted with the general public and with those in the medical
field, the more I realized how little people know about bladder
cancer even though it is ranked as the fifth most prevalent cancer
in the U.S. among both men and women, and is as prevalent as
cervical cancer in women and much deadlier.
Bladder Cancer: Deadlier Than Cervical Cancer! Why?

Ten years ago, I was diagnosed with a bladder infection.  (I had never had a bladder infection in my life and I
did not know the standard procedure for treatment.) The medication the doctor gave me didn’t seem to affect
the symptoms. The pain continued even though I took the antibiotics and followed the doctor’s instructions.  I
was not told by my regular doctor there was microscopic blood in my urine, and I did not know to ask.  Lucky
for me, my regular doctor went out of town and I had to see another doctor.  This doctor immediately referred
me to an urologist.  This is when I found out that it was not a bladder infection, but bladder cancer.  

After undergoing several diagnostic tests, the urologist told me that my cancer was already invasive, and had
engulfed the entire left side of my bladder.  The cancer’s advanced stage put me at high risk for survival. At
this time, I had never heard of bladder cancer, and I was more frightened than I had ever been in my life.  I
frantically searched the internet, but found little information.  What I did, scared me even more.   My urologist
told me that a radical cystectomy was necessary because of the advanced stage of the cancer.  Surgery was
scheduled to remove my bladder, and it also included a radical hysterectomy.  I started my research again and
learned about the different surgical procedures.  I took what I had found with me to my next doctor’s
appointment to discuss the possibility of constructing an Indiana Pouch instead of an urostomy.  

Again I was lucky because the cancer had not spread to other areas of my body; the doctor was able to
construct an internal reservoir using a section of my colon referred to as an Indiana pouch.   My plumbing may
not work the same as it did prior to surgery, but I have been luckier than many of my sisters who have not
survived a late diagnosis.  What I learned from my experience is that blood in the urine and urine frequency
are symptoms that should not be ignored. Urologists have tests to pinpoint the cause of these symptoms, and
if your regular physician does not refer you to one…you need to find one and be checked.

Much work needs be done to continue to keep bladder cancer research funding and physician and patient
awareness in the forefront.  Unfortunately, there have been no celebrity spokespersons or corporations to
champion public health messages. Because of this, women are still not receiving the information they need,
getting proper diagnosis, or getting the support needed to fight bladder cancer, even though the prevalence
of bladder cancer is similar to ovarian and cervical cancer.  Women who are otherwise conscientious about
their health are unaware of these statistics.  Even more shocking is that it has not been among the cancers of
concern for primary care physicians and gynecologists.  

I am a very lucky 10-year survivor of Stage III bladder cancer, and when I was finally diagnosed there were
“no” sources of information for women and very little information available about bladder cancer at all.  A
recent study stated that  I have created the Bladder Cancer Sisterhood (http://health.groups.yahoo.
com/group/bcsisterhood/).  It is a web-based group for bladder cancer support, and created the Bladder
Cancer Sisterhood Blog (http://sylvialramsey.com/bcsisterhood/).  I am presently working with some of my BLC
sisters to establish the Bladder Cancer Society foundation.    Whose main function will be:  “to raise
awareness of bladder cancer among the general public and the medical community; to advocate through all
means available the advance of research into a cure; treatment, early diagnosis and quality of life issues of
survivors, and to support bladder cancer survivors and their loved ones by providing community as well as by
encouraging the concept of informed medical consumerism.”

I am also a bladder cancer advocate, and was designated a national bladder cancer representative to attend the
2005 Specialized Program of Research and Excellence (SPORE ) Conference in Washington D.C.  In 2006, I was the
only patient advocate representative for bladder cancer. This year I will not be attending because the National
Cancer Institute’s (NCI) research budget was cut and there are no scholarship funds for patient advocates to
attend.  Dare I wonder, what other types of cancer advocates “will” be able to attend because they have the
celebrity spokespersons and corporations behind them.  This is most unfortunate since bladder cancer is ranked
the second most common urological cancer in the U.S. and has surpassed lung cancer in prevalence.  In women, it
is ranked alongside cervical cancer.  However, little is being done to investigate this disease in women, much less
to educate the public, or the female population.

Researchers from the University of Michigan recently reported that women who go to their primary care physician
with a new or recurrent episode of blood in their urine are less likely to be referred to an urologist for further
examination than are men.  They believe that this may contribute to the fact that women with bladder cancer are
being diagnosed at more advanced stages, when their chances for survival are markedly decreased.  I know from
experience that we must take charge of our own health, and make sure that we are educated and knowledgeable
about our health.  Bladder cancer has lived in the “closet” too long, and we must open the door to look it in the
face for what it is, learn about it, and diagnose it.  Early diagnosis is of ultimate importance and this is why:

The disparity between women and men in both the diagnosis of bladder cancer and five year survival rates is
compelling. Bladder cancer occurs more frequently in men than women, but women have a disproportionately
higher death rate. There is a higher percentage of men who survive for ten years after diagnosis than women who
survive for five. However, the five year survival rate for bladder cancer is 92% in women if tumors are detected
while they are still confined in the bladder lining, but can drop as low as 10% or less once they become invasive
(www.seer.cancer.gov).  

Testing can make a difference in your chance for survival.  It is not just older women who get bladder cancer; even
pregnant young women can be diagnosed with bladder cancer.    Women are often the keepers of healthcare – our
own and our family’s – let’s help them to understand that there is another cancer that disproportionately kills them
– but death and poor outcomes can be avoided if they only know about the disease – bladder cancer.

Note:   Depending on the person's anatomy, the doctor may use part of the small intestine to make a tube through which
urine will pass out of the body through an opening or stoma, on the outside of the body, this is called ostomy or urostomy.
Urostomy requires one to wear a special bag to collect urine.
This article was published a few
years ago in various papers and
magazines.  Unfortunately, for the
bladder cancer survivor, not much
has changed.  Except...we now have
the
American Bladder Cancer
Society!  That is a big step forward.
We are making progress, and you
can help.