My ovarian cancer journey

My ovarian cancer journey

By Nancy Long

I have worked in various areas of women’s health throughout my career as a registered nurse. I became a nurse practitioner in OB/GYN in 2000. I knew about and had cared for women who had been diagnosed with ovarian cancer. So how was it that I could have missed the signs and symptoms myself? The symptoms of ovarian cancer can be so vague and often are mistaken for many other less serious illnesses. That is why one slogan previously coined for ovarian cancer was “Listen ~ it whispers.”

But ovarian cancer really doesn’t whisper at all, it shouts. What we need to do is listen more carefully to our bodies. My first symptom was constipation, which all women have at certain times in their lives. It became more severe with some intermittent rectal pain, but my mind was relieved after I had a colonoscopy and the gastroenterologist reported that all was normal (with my colon). At the same time, I was increasingly fatigued, but I rationalized that it was due to age, or how busy I was. And, everyone has indigestion – right? Well, mine was getting worse, and antacids didn’t help. Then came the extreme abdominal bloating, which is when I finally admitted that something was seriously wrong. With the help of the physicians I worked for at the time, I was diagnosed on August 13, 2004 with Stage 3C ovarian cancer. Needless to say, like everyone else who gets a “cancer” diagnosis, I was shocked, saddened, and so afraid. After extensive surgery and 17 months of chemotherapy, with many prayers and the support and help of my wonderful husband, family, friends, and excellent medical care, I am blessed today to be a 12-year survivor.

There have been many blessings that have come about because of cancer. I met my dear friend, Paula Kozik, probably not accidentally, at Sam’s Club. I was drawn to her bald head! As I adjusted my wig, I approached her and boldly asked if she had cancer! We had way too many things in common; same cancer, same doctor, same treatment, and we were both Italian – a match made in Heaven! We promised that if we “made it,” we would work passionately to inform other women about the signs and symptoms of ovarian cancer. We are now Maryland Chapter co-presidents of The National Ovarian Cancer Coalition (NOCC). Paula and I also connect with many women who have received an ovarian cancer diagnosis—it’s encouraging for them to see women who are long-term survivors!

I am so proud to volunteer for The National Ovarian Cancer Coalition, whose main mission is to work tirelessly to prevent and cure ovarian cancer. It is also committed to providing support and improving the quality of life for ovarian cancer survivors. Our Central MD Chapter (all volunteer) attends many health fairs, offers presentations to anyone who will listen, has an ovarian cancer support group, and provides lovely T.E.A.L. totes to women newly diagnosed with ovarian cancer. These totes offer valuable information, stories of hope, and many comfort items that have been so appreciated by recipients. We are hoping to get them in all Maryland hospitals.

Even after this many years, it is still difficult to wait for results each time a blood test or a CT scan is done. It is hard to watch our friends have recurrences, meet people devastated by a new diagnosis, or watch a friend succumb to this deadly disease. That is why we feel our mission is so important. Even though the signs and symptoms of ovarian cancer can be “normal” for brief periods in a woman’s life, if those symptoms persist for more than a few weeks, it is important to seek care. If the symptoms cannot be explained, or if they return, it might be wise to have a discussion about the potential of it being ovarian cancer. As you may know, at present there is no good screening test for ovarian cancer. For most women, ovarian cancer is diagnosed at a late stage, when the prognosis is poor. But if caught early, when the cancer is confined to the ovary, there is a 90 percent cure rate*.

Nancy Long is co-president of the Maryland Chapter of The National Ovarian Cancer Coalition (NOCC). The NOCC Central MD hosts its 7th annual 5KRun/3K Walk to Break the Silence on September 18, in honor of Ovarian Cancer Awareness month. To register, please visit: Runwalk.ovarian.org/Annapolis.

*This information can be found in the following National Institutes of Health (NIH) report, among others.

NOCC supports the AllTrials initiative calling for all clinical trials to be registered and their results reported.

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