It had never been a color I’d given a lot of thought to. I mean, it’s pretty, and I had always associated it with mermaids, but to add it to my wardrobe and my hair? Six years ago, I would have said, “You must be joking.”
But six years ago, I didn’t know my best friend, Seana, had ovarian cancer.
Then again, neither did she.
After Seana had been diagnosed, ironically during Ovarian Cancer Awareness Month, I did everything I could to read about this disease, also known as the “silent killer”—a nickname didn’t offer me any comfort at all. When I searched the internet (my first mistake), there were pages and pages of treatments and “treatments” and symptoms and the dim prognoses.
I remembered actress Kathy Bates had been treated for the disease. I Googled famous people with ovarian cancer and there were more than I knew about. Almost all had died. That didn’t offer much comfort either. The more I “researched,” the more fearful I became that I wouldn’t grow old with the one person I’d literally shared a playpen with.
Since Seana lived in Maine, what I could do for her was limited, but one of the things she insisted was that I get involved with a local ovarian cancer group in San Antonio, “because it’s not the silent killer that people say it is.”
Really? Not totally silent?
“Nope,” Seana explained. “The signs are there. We (as women) need to know what they are. So get out there and empower others.”
Then I remembered Schoolhouse Rock’s tagline: Knowledge is Power.
I planned to become mighty powerful and empower plenty others.
With the wealth of information out there, I had to find local, reliable resources to help me navigate the good, the bad, and the ugly (inflammatory) news. Thankfully, Texas has four chapters of NOCC: Austin, Dallas/Ft Worth, Big Bend, and San Antonio.
The National Ovarian Cancer Coalition started as a grassroots organization by ovarian cancer survivors in 1991, in Boca Raton, Florida. The mission was to raise awareness, provide education, and support to women with OC and their families and support bases. By 1995, the group was incorporated and spread to communities all over the country. The local San Antonio chapter opened in 2007, and thank goodness they did because San Antonio needed a resource like this.
“My goal for San Antonio is to educate and inform,” explains Amber Wood, director of NOCC—San Antonio. As a former photographer for the U.S. Army, Wood literally knows what it’s like to navigate minefields. And she brings that same temerity to NOCC.
Wood makes sure those struck by ovarian cancer have access to solid information, education, and support as they navigate unknown territory and come out the other side stronger, better informed.
Not only do Amber and the amazing volunteers help educate those needing information and support on a local level, they reach out to doctors, hospitals, and wellness centers to spread the word about the not-so-silent signs and symptoms of OC.
Worried you might have something concerning, but don’t want to talk to anyone yet? No worries. The easily navigable NOCC website presents the most recent information, clinical trials, and guidelines for signs and symptoms.
But why should any of us be worried about ovarian cancer, especially if we have no family history of it?
According to the NOCC main page, “In women ages 35–74, ovarian cancer is the fifth leading cause of cancer-related deaths. An estimated one woman in 75 will develop ovarian cancer during her lifetime. The American Cancer Society estimates that there will be over 22,280 new cases of ovarian cancer diagnosed this year and that more than 14,240 women will die from ovarian cancer this year. When one is diagnosed and treated in the earliest stages, the five-year survival rate is over 90 percent.”
Being a former trauma and critical care nurse, I appreciated the odds of 90%, but that’s only for 20% of women whose OC is caught in stages I or II.
For women whose cancers aren’t caught early, their five-year survival rate can be as low as 28%.
My friend was stage III epithelial. Her chances of a five-year survival rate were 34%. That hit me square in the chest. Only a 34% chance she would be around five years after her diagnosis.
“Because there aren’t great early detection tests for ovarian cancer,” adds Wood, but information in the “What Everyone Should Know about Ovarian Cancer” NOCC brochure, does educate about three things any woman who believes she might have OC, should insist upon: a physical exam, a trans-vaginal ultrasound, and a CA-125 blood test.
Even though none of these sounds like a fun way to spend a morning (or afternoon), they can help detect problems early.
Understand that even though the blood test CA-125 can detect some forms of ovarian cancer, it’s not completely reliable and can give false positives. Some practitioners don’t find it necessary or reliable, but depending on the type of OC, it can help monitor the disease and whether treatment is working.
This is the case with my friend.
If you feel strongly about having a test done, even to get a baseline for yourself to compare to issues in the future, discuss this with your physician or health care provider. It may or may not be covered by insurance.
More questions or concerns about part of the OC journey can also be addressed through the NOCC network and Cancer Connection. They can also help navigate these obstacles and questions effectively.
In addition to solid knowledge, the local NOCC chapter offers a monthly support group, plus information on clinical trials, risk factors, and local doctors who treat those who suspect they might have OC as well as those who do.
The more I volunteered with NOCC, the more stories I heard of those lost to OC. Mothers, daughters, sisters, friends—many put their health on the back burners while caring for everyone else in their worlds.
We women are very good at taking care of everyone else in our lives, even at the expensive of ignoring our own health. That’s where an organization like NOCC can help those who need solid information.
Because of research and continued education, Seana’s about to celebrate her sixth cancerversary in September and presently has no evidence of disease.
It gives me hope when more women are surviving, beating the odds that OC has fiercely stolen from so many.
Like any non-profit, NOCC functions because of donations and fundraisers. This year, the San Antonio chapter will celebrate its 10th anniversary with the Break the Silence Walk/Run 5K on September 2nd.
Although symptoms can be considered vague, new symptoms that persist for more than two weeks, should be investigated.
If not resolved after seeing the health practitioner, please go back and get re-evaluated.