September 11, 2006: Annamarie DeCarlo - speech Washington, DC - Congressional Briefing

Sept. 11, 2006:

Greetings -- After watching Dr. Wolf's presentation on mice and ovarian cancer, I ant to make it clear to all of you:

I AM NOT A MOUSE!!!

My name is Annamarie DeCarlo, and I live in Annapolis, Maryland.

I want you to take a good, long look at my face.

I want you to remember me, this face: my green eyes, my Hair by Manuel, my newly straightened bottom teeth, my too short chin, my fair complexion, (the “beauty” of which I attribute to “better living through chemotherapy.")

It also is the face of my mother, Concetta Goetzinger, who died of advanced ovarian cancer at age 68 on Oct. 12, 2000, five months before I was diagnosed with advanced ovarian cancer during a hysterectomy for endometriosis.

I was monitored carefully during her illness -- multiple transvaginal ultrasounds, blood tests, CT scans, and bimanual pelvic examinations, yet still was diagnosed -- by accident -- during surgery for another condition.

BY ACCIDENT. That should shake every single person in this room to the bone.

This kind of "accidental" diagnosis must stop. We MUST help researchers and physicians develop an effective screening tool to detect this cancer in its early, most curable stages.

I really could stop right here, as I believe these are enough reasons for me to persuade you to continue to push for more research and more education for ovarian cancer and all gynecologic cancers.

But I want you to remember me because, like New York Yankee baseball great Lou Gehrig, I am one of the luckiest people on the face of the earth.

I am one of the 30 or so percent of late-stage ovarian cancer survivors who live 5 years past diagnosis. Come on! We can AND MUST do better than 30 percent!

My survivorship is less about me than I ever expected it would be. I slogged through my six treatments of chemotherapy -- taxol and cisplatin -- repeating as I dragged myself to work every day that "chemo is my friend, chemo is my friend."

The treatment is hard, and it is debilitating. It takes a long time -- years -- for your body to rebuild itself from the toxic cocktails. And that’s if you are among the lucky ones to respond well to front-line treatment, not have co-morbid conditions, and not recur!

I still anxiously await test results, even after more than 5 years. I know how this cancer behaves. It is insidious and it is relentless. It comes back more often than not.

I have been loved and cherished by my husband, my family, my friends, my medical team, and my extended family of ovarian cancer survivors and their caregivers.

I still wonder about the future, and how much of a future awaits me. As one of my ovarian survivor friends says, "You'll know you've beaten ovarian cancer when you die of something else."

I have survived more than 5 years and I have a future because of the diligent, tireless efforts of researchers and physicians who are working so hard to develop an effective screening test and working so hard to develop innovative treatments.

I have a future because of the women who have gone before me, some living and some dead, who are or were brave enough and desperate enough to try anything to stay alive.

Some of these women endured 12 to 18 treatments of what was the "gold standard" when I was treated 5 years ago. I have often wondered how I would have endured an additional 6 or 12 rounds. These women are my heroes.

My survivorship also is about the following women, my cherished friends, from whom I have learned more than I can properly tell you about courage, about faith, about “smarts.”

My survivorship is about Kelli Auletta who died Feb. 19 at age 38.

It is about Judi Watson, who died March 8 at age 56.

It is about Stephanie Whitaker, who died March 9 at age 38.

It is about Rita Lewis, who died Aug. 4 at age 52.

It is about Shirley, who has been on continuous treatment for 10 YEARS. Imagine that: 10 YEARS!

It is about Cindy, who has been exploring all combinations of drugs and treatments for 4 years.

It is about Helen, a 19-year late-stage survivor, who still is alive and healthy because of innovative treatments and clinical trials.

It is about Fran, who, after 5 years of various chemo combos, surgeries, infections, and all kinds of secondary problems, today lies in a hospice bed.

It is about Annie, who made that same difficult decision last week, after years of dealing with treatment that failed her.

These all are educated, intelligent, thoughtful women, broadsided by a cancer that has confusing symptoms, and jerked around by a medical system that continually misdiagnoses this cancer because there is no screening tool.

There also must be a national effort -- on par with the campaigns being waged against breast cancer (get your mammogram!) and colon cancer (get your colonoscopy!) and lung cancer (don‘t smoke!) -- to develop an early detection and awareness campaign for women and their health care providers.

Sheryl Silver, who lost her sister Johanna Silver Gordon to ovarian cancer, already has done the work regarding a national effort, writing Johanna’s Law (HR. 1245 and S. 1172). It is disgraceful and unacceptable that this proposed legislation has not been passed into law by the Congress of the United States of America. I wonder sometimes: do these decision makers have women in their lives?

We must give our health care providers the tools they need so no more women are diagnosed with a deadly cancer by accident, as I was.

We must give the women in this country -- and, by extension, women around the world -- a fighting chance to survive ovarian cancer.

If you believe this is “someone else’s problem,” or you don’t believe you personally have anything at stake, ask yourself these questions:

Are you a woman? Do you have a mother? Do you have a wife? Do you have a girlfriend? Do you have a daughter? Do you have any female friends?

If you answer “yes” to any of these questions, you have a stake in the development of a reliable screening test and a national outreach program.

Remember my face. I am a survivor. And one of the luckiest people on the face of the earth.

Thank you.


Annamarie, Annapolis