| Creating a Bladder Cancer Sisterhood |
I have waited for almost 12
years for someone to
create a group that
supports, advocates
research and awareness,
and provides information
for women who must
survive this cancer. I have
looked for a place to
interact with other women
survivors to share
questions and provide
advice that wasn't co-ed. A
place where I could feel
comfortable discussing
issues that relate
specifically to women. It
didn't happen.
I have been an active
bladder cancer advocate
for over six years. I
decided that if my heart's
desire was to become a
reality, It was up to me.
What has been achieved
so far is just a start, the
beginning, of what will
become our own platform
to advocate the support,
awareness and research
that is needed for female
bladder cancer. I will do
my best to launch this goal,
but I will need the help of
my sisters to bring it to its
full realization. Join me in
this quest.
| BC Sisterhood Blog Bring about awareness, advocate research, and support for women who are victims or may become victims of bladder cancer. Click Here to Read The BC Sisterhood Blog |
| If you would like to join the Bladder Cancer Sisterhood Group to help support and create awareness for bladder cancer affecting women, you can click on either of the links below. |
| Bladder Cancer Awareness Pin To purchase and support bladder cancer awareness pins Click on pin. |
| All the content contained herein is copyrighted pursuant to federal law. Duplication or use without the express written permission of sylvialramsey.com subjects the violator to both civil & criminal penalties. Copyright © 2004 sylvialramsey.com. All rights reserved. |
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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.
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.”
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.
Bladder Cancer: Deadlier Than Cervical Cancer! Why?
Continued from "Deadlier than Cervical Cancer" above:
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.
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.