Black Gyrl Cancer Slayer Says 'Be Your Best Advocate'

Posted by Chana Garcia on May 29th 2009

Chana Garcia is a freelance copy editor for Black Voices who has been writing about cancer awareness and women's-health issues. To learn more, visit her blog at blackgyrlcancerslayer@wordpress.com.

I knew something was wrong. It all started in February of 2008 with some weird gurgling in my belly, followed by a bit of weight gain and bloating. I had just spent Christmas and New Year's in Mexico and thought maybe I had eaten something bad or accidentally drank the water. I was kicking myself for asking for a glass of ice one morning.

Thinking I was suffering digestion issues from a week of partying hard, I made an appointment to see a gastroenterologist. That one appointment turned into many. The bloating continued to worsen and, at one point, I looked several months pregnant. My co-workers and neighbors, excited about my impending motherhood, asked about my due date and guessed at the sex of my baby. Looking back, I wish that had been the case.

Over the following months, I underwent a series of tests before an ultrasound finally revealed what was happening inside my body. "You have two large tumors on your ovaries," my gastro doc said. "One is the size of a softball."

Now, I had been diligent about making my yearly doctor's visits and had seen my gyn several months before.

When she saw the results of my ultrasound, she thought a cyst she'd found on my right ovary a few years prior had simply grown into a mass that needed to be removed. The process would involve a minimally invasive surgery, she told me, which we could schedule when she returned from vacation in a week. "Your chances of having ovarian cancer are low," she told me reassuringly. If you go by the statistics, she was right.

Listening to a Nagging Feeling
Ovarian cancer is a rare disease, accounting for about 3 percent of all cancers. It primarily affects Caucasian women over the age of 50 and is prevalent among the orthodox Jewish community. As a 32-year-old black woman, I didn't fit the bill.

But I hadn't been feeling like myself, and I had a nagging feeling that I was suffering from something a bit more serious than enlarged cysts. So while my gyn was on vacation, I called her office relentlessly. I harassed her staff until her nurse practitioner finally agreed to administer a CA-125 test, which is used to determine the presence of cancer in the blood. Normal results are between 20 and 30. Mine was in the thousands.

In May, three months after that initial doctor's visit, I was diagnosed with ovarian cancer, stage III C. What followed was a whirlwind of appointments and discussions with specialists in New York City, where I live.

I had very little time to grasp the enormity of the situation, which probably kept me from spiraling into depression. I reached out to friends who are doctors and each of them advised me to act quickly to find the best surgeons and oncologists to remove the cancer. "This is serious," one doctor friend told me with worry in her voice.

A particularly hard disease to detect and treat, ovarian cancer can easily spread to other organs. More than 70 percent of cases are found in later stages, resulting in a five-year survival rate of about 46 percent. It's often referred to as a silent killer because, until fairly recently, it was widely believed to be asymptomatic. It turns out, however, that most ovarian cancer patients experience weight gain or loss and digestion problems.

That gurgling I had noticed months earlier was fluid, called ascites (a-site-ease), building up around my tumors – another classic symptom. Close to nine liters had been drained from my abdomen during my surgery.

And because it rarely affects younger women or women of color, it can easily slip under a doctor's radar.

I am a classic example of what happens when medical professionals engage in age- and race-based bias. It never occurred to my gyn, also a young black woman, that I had ovarian cancer. She had almost completely ruled it out.

Proud to Be a Survivor
Shortly after my surgery, which left me unable to have children of my own, I made a promise to myself that I would triumph over this disease and do whatever I could to promote awareness.

If nothing else, my story illustrates why it's crucial to listen to your body. Ask questions, keep records and be persistent if you suspect something is wrong – in short, become your own advocate. If I hadn't, my story could've been tragic.

Today, a year after one of the most difficult times in my life, I'm proud to call myself a survivor. Not long after my surgery, I was diagnosed with a low-malignant tumor that, nevertheless, had to be treated aggressively. I still have to undergo chemotherapy twice a month to attack some residual cancer hanging around in my abdomen and to stay ahead of this often-recurring disease. For many ovarian cancer patients, the road to recovery is a lifelong fight, but there are survivors who have been in remission for 20-plus years. I plan to be among them.

Easy To Slip Through The Cracks
With more than 1 million Americans diagnosed with cancer every year, it's clear that we have a lot of work ahead of us. But there's some encouraging news coming out of Washington for all cancer patients.

Under President Barack Obama's proposed health care reform, more than $600 billion in reserve funds would be used to transition our current health care system into something more like universal coverage, and funding for cancer research would double over the next five years. The president has even dedicated certain dollars to fighting diseases that are particularly hard to cure, like ovarian and pancreatic cancer.

Back in March, Senators Edward Kennedy and Kay Bailey Hutchinson introduced critical legislation that would require private insurers to cover routine care for all cancer patients, as well as those participating in clinical trials. It's the most comprehensive plan Congress has seen since the National Cancer Act was passed in the '70s.

The most important step to conquering cancer, however, is becoming vigilant about your own health. Getting regular checkups is vital to preventive care, especially for those who have a family history of cancer. And if you suspect something's wrong, be proactive about it. Don't let yourself slip through the cracks. No one is going to care more about your well being than you. Take it from me.

For more information about ovarian cancer, check out the following resources:
Ovarian Cancer National Alliance www.ovariancancer.org
Ovarian Cancer Research Fund www.ocrf.org
SHARE www.sharecancersupport.org