An ovarian cancer diagnosis unfortunately brings to mind grim statistics instead of optimistic ovarian cancer survivor stories. Why? The numbers can be discouraging. Each year, approximately 21,500 women are diagnosed with the disease. Last year, an estimated 15,500 died from ovarian cancer.
Every woman diagnosed with breast cancer knows at least one BC survivor she can look to with hope and questions. But ovarian cancer is diagnosed more infrequently and often at a later stage. OC patients are typically older, and the symptoms of ovarian cancer can be confused with any of a number of illnesses. In its earliest and most curable stage, there may not be any physical symptoms, pain or discomfort. For these reasons, you may not know an ovarian cancer survivor.
My Survivor StoryBut now you do. I'm one -- and have been for 15 years. Diagnosed at age 34, I was a young mother with two toddlers (3 years old and 9 months old.) My tumor was fast-growing and atypical for early-stage OC, as it caused episodes of illness over a five-month period - high fevers accompanied by constipation and/or diarrhea, abdominal pain, loss of appetite, and weight loss. Yet even with these symptoms, it was a challenge to identify. It took more than four visits to various doctors and several diagnostic tests -- a sonogram, CT scan, and a blood test called a CA-125 -- to determine what was wrong.
By the time the tumor was spotted on a CT scan, it had grown to the size of a grapefruit. And I had lost 40 pounds, weight I thought my body was naturally shedding in the months after the birth of my second child. I had no risk factors, no family history of ovarian or breast cancer. It seemed to come out of the blue.
Help Along the WayMy treatment included a hysterectomy followed by 6 months of chemotherapy. Instead of negotiating family/career balance, my challenge was family/care balance. For three months, my mother raised my 9 month old as I was unable to lift her after surgery. When each round of chemotherapy left me bedridden for five days, she also cared for my 3 year old. Fortunately, my OC was caught at Stage 1 and the prognosis for full recovery was very good. I also had the guidance and wisdom of another ovarian cancer survivor, a woman named Clare Braham who reached out to me via the internet (back in the days when there was very little OC support available.) Through emails, cards and phone calls, she gave me encouragement and strength. Her story was the light at the end of my OC tunnel.
Their Survivor StoriesA decade after my diagnosis, I met more than a dozen other ovarian cancer survivors. We'd all volunteered to staff the first national hotline offering peer-to-peer support for women with ovarian cancer. Through SHARE (Self-Help for Women with Breast or Ovarian Cancer), we did just that, sharing our stories of how we were diagnosed and how we fought back. We learned that hotline callers might ask us for our own experiences, seizing each survivor story as a lifeline of hope and inspiration just as I'd done with Clare.
And the inspiration around me was profound. In my hotline training group, women from 40 to 70 revealed that they'd recovered from Stage 2, 3, and even Stage 4 ovarian cancer. I learned that even if OC recurs, it can be successfully treated. And I learned about the variety of treatment options that hadn't been available to me 15 years ago. We are making progress in treatment and diagnosis. And more important, we're making women aware that ovarian cancer exists and that they should seek out medical care if they experience any symptoms.
The Ugly StepsisterI've often called ovarian cancer the ugly stepsister of 'female cancers' because OC doesn't get the same kind of attention as breast cancer. The advantages of mammograms, the habit of monthly self-exams, the instant recognition of a pink ribbon's meaning, and the widespread availability of support groups -- this is what breast cancer awareness and advocacy has made possible. In comparison, ovarian cancer awareness and advocacy is still in its infancy. Groups like Gilda's Club, SHARE, Ovarian Cancer National Alliance, the National Ovarian Cancer Coalition, and others are educating women about the disease. But the meaning of th teal-colored OC ribbon is still largely unknown.
Ignoring Our HealthWomen know what to do when they feel a breast lump. But the uncertainty clouding the often vague symptoms of ovarian cancer makes it hard for women to take action.
We often brush things under the rug when we're not feeling well. Because we tend to the needs of others, we've become adept at ignoring our own. I know that my own tiredness, weight loss, and loss of appetite was something I ignored for months, thinking, "I'm still recovering from mypregnancy and c-section and this what life feels like when you're raising two kids under 3. It's normal to feel this way."
Not Simply in Our HeadsNo, it's not. You sense when something's wrong, even if you can't put your finger on it. After volunteering on the SHARE ovarian cancer hotline for several years, I've heard countless women say that they had a nagging uneasiness over subtle changes that worsened over time. But because most of us are (or have been) caregivers, we're afraid of being hypochondriacs. We're reluctant to take time away from others to focus on ourselves. Many hotline callers felt that way. I felt that way. And when we do take the time to see a doctor but come away without answers, and are made to feel as if our 'dis-ease' may simply be in our heads, how many of call it quits?
Your Own Best AdvocateI am alive today because I didn't let my first inconclusive visit to a doctor be my last. I saw a nurse practitioner, an OB-GYN, a surgeon, and a family practitioner before the necessary tests were ordered and an accurate diagnosis was made.
When it comes to ovarian cancer, you have to be your own best advocate. If you're reading this because you may have some of the symptoms but you're afraid of an ovarian cancer diagnosis, don't let the fear stop you from seeking medical help. Like every other form of cancer, early detection is the key. I am an ovarian cancer survivor story -- just one of many. Fifteen years...and still counting.