Dying to be Heard - by Sharon Robbins

October - The month for pretty pink ribbon pins. Flip through the newspapers, and you can see that there are many events, talks, symposiums organised over the weekends focusing on early detection of breast cancer, treatment options and reconstructive surgeries. While it is an excellent message to bring attention to the members of the public on issues about getting regular mamograms and not to ignore suspicious lumps, what seems to be lacking is the message that you are never too young to get breast cancer. I was diagnosed at age 30. I had met a lady, diagnosed with the disease, right after she graduated from university. You are just never too young to get breast cancer.

Now that the disease has progressed to Stage 4, it does seems to me that we are case studies that will never be discussed in such talks and symposiums. Who wants to hear about how the disease has progressed despite treatments? There's a need to paint a rosy picture that the disease is "curable" if detected in its early stages. Not true, I don't think I will be a good candidate to put on the stage for such talks, i probably scare everyone with the true reality of the disease.

Anyway, I found the message in this article that is just so amazingly true

Dying to Be Heard
by Sharon Robbins

In Memorium

October 10, 2003

During the month of October we are bombarded with the message that early detection of breast cancer equals cure...that anyone surviving five years from diagnosis is, indeed "cured". This year, I have decided to speak out. Like many other women, I believed that when my breast cancer was detected early and I had the most aggressive treatment available, I had done my job and could look forward to the rest of my life.

I believed the early detection message. I was 45 years old. I was even pronounced "cured" by the doctor who was my oncologist at that time.But like so many others...thousands of others every year...I was diagnosed with Stage IV metastatic breast cancer after celebrating that five year anniversary.

After the initial shock, I was certain that I would be dead within eighteen months. That's what every article I could find on the internet said. That was over two years ago. I am one of the lucky ones. Up to this point, my cancer has responded well to treatment. I was even one of the ones who went into remission due to new drugs and therapies. But what about tomorrow? Like thousands of others, I will never be "cured". Because, you see, cancer that has metastasized is not only deadly; it is a very crafty foe. It can mutate and learn how to get around the roadblocks that any given treatment throws in its path. Today it may be in your liver, tomorrow your spine.

Like thousands of others, my only hope of continued survival is to have new drugs developed and new treatments that can stay one step ahead of my cancer. It doesn't have to be a death sentence. We CAN continue to live productive lives, but only if the research is there. When survivors are discussed, no one ever hears about us. They don't want to hear about us. We are the hidden survivors. We are your wives, your mothers, your daughters. We are you. today or tomorrow. We are dying to be heard.

If breast cancer can truly now be considered a chronic illness, why are we still dying at a rate of more than 43,000 every year? It is a deadly disease, and a pretty pink ribbon cannot make it go away. We are in that "success statistic" if we have survived for five years. Some days we don't feel very successful.

We live with breast cancer every day of our uncertain lives until it finally takes us from our families and loved ones. If we are one of the "lucky" ones, that is often after years of debilitating treatment that makes the phrase "quality of life" absolutely ridiculous and has drained our families of any financial security they may have had. If we are fortunate enough to survive until we are eligible for Medicare, we face the knowledge that our prescription drug bill will be astronomical and we will no longer have medical insurance that covers it. If, and when, a new drug is finally approved by the FDA, it can be six months or more before Medicare will pay for it.

How many women die in that six months because they can't afford the treatment? We are dying to be heard.It is time to see more funding and emphasis for both first line and metastatic treatment, not just for awareness. There are now more graves from women who have died since 1991 from breast cancer than the total graves in Arlington Cemetery.

Our doctors tell us that we don't have to worry about breast cancer until we are older. Is it acceptable to die just because we are over 50? I don't think so. I am not ready to die. As I write this, I am awaiting the arrival of my first grandchild. I would like to be here for her. But age isn't even the true story. Tell that story to the young woman who was diagnosed with Stage IV breast cancer when breastfeeding her first child. Tell that to my stepdaughter who, at 33, and about to have her first child, looks at the future with fear because her grandmother, mother, and now her stepmother have all had stage IV breast cancer..each at a much younger age. I am the only one still here. Tell that to a husband who is now raising his two children alone, getting them ready to start first and third grade. They are dying to be heard.43,000 of us dead every year. That is half the population of Henderson County.each year.every year. Imagine losing every single person in this county, in the space of two years.

That is what breast cancer can do, and will continue to do until we look for answers. Not just slogans, real answers. We are dying for them to be found.Please help speak for us.

Contact your Senators and Congressmen. We need funding for breast cancer research, not just awareness campaigns. We are dying.http://www.cancerlynx.com/grave.html