Favorite Project – Bladder Cancer Cont.

Posted in Author, Favorite Projects, Uncategorized, writing at 12:06 am by Sylvia Ramsey

Bladder Cancer Deadlier…Cont.

Fifteen 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 did not 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. This went on for almost a year. 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 find, 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 as well as 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. More research that is recent reported that children who had childhood leukemia are high risk for bladder cancer later in life and there are a large number of substances in the environment, that if there is enough exposure, can lead to bladder cancer.
I am a very lucky 14-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. That does not need to be the case anymore; I have created the Bladder Cancer Sisterhood in the health groups on Yahoo. It is a web-based group for bladder cancer support. More recently female survivors have launched a new foundation, The American Bladder Cancer Society of which I am the Vice-President, and can be found online at bladdercancersupport.org. It has a forum for the different stages of bladder cancer, one for men and one for women. It has plenty of links to reliable web sites where information can be found. There is a chat room and a scheduled chat on Sunday evenings.

As you can tell, I am 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. That year I was the only patient advocate representative for bladder cancer. I have not been able to attend since 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 for a cancer to be as prevalent and yet, so underserved.

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 are 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).

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 1: 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.
Note 2: At the National Cancer Institute (NCI), SPORE stands for Specialized Program of Research Excellence. Within the SPORE program, researchers design and implement programs to improve cancer prevention, detection, diagnosis, treatment, and control. The program was developed to promote multidisciplinary research throughout the three main categories of science.

My Favorite Project – Bladder Cancer Awareness

Posted in Favorite Projects, Uncategorized, writing at 12:01 am by Sylvia Ramsey

Bladder Cancer: Deadlier than Cervical Cancer. Why?

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 fulltime job as the coordinator for the GMC-Augusta Community College E-Library, Speech Communications professor, and a published author and poet.

Ever since the day I was 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. I find this truly amazing since bladder cancer is the fifth most prevalent cancer, and in women, it is as prevalent as cervical cancer. However, women are four times more likely to die from bladder cancer because they are too frequently diagnosed at a much later stage of the disease.

To be continued…