September is an important month for me because it is Ovarian Cancer Awareness Month. I am a 15-year survivor of ovarian cancer. The mortality rate for women diagnosed with ovarian cancer is high and living past five years from diagnosis is uncommon. I feel extraordinarily grateful to be a thrive and spend many volunteer hours advocating on behalf of women diagnosed and living with ovarian cancer. City of Edmonds Mayor Mike Rosen graciously created a Proclamation for September to bring awareness to ovarian cancer.

I share my story because education and awareness is the key to early diagnosis. In 2009, I visited my primary care physician at the time of my 50th birthday for a routine annual physical exam. I told her that I suspected that I was starting menopause because I had irregular and heavier periods, and I was gaining weight (without any change in my diet or exercise routine). She seemed to agree and proceeded to give me a typical annual physical including a pelvic exam. She did not notice anything abnormal about my ovaries or uterus when doing the pelvic exam, but she decided to send me for a vaginal ultrasound anyway (which is very unusual for a primary care physician to do). The ultrasound revealed that both my ovaries were enlarged to the size of grapefruits and that I had complex cysts. My physician immediately sent me to see my gynecologist after the results came back.

My gynecologist advised me to have a complete hysterectomy as soon as possible and she had a CA-125 blood test done. It came back at 76 — normal is anything under 30. She believed that I had ovarian cysts but did not suspect cancer. She told me she would have a general surgeon assist her with the operation. A family friend who is an OB-GYN at the University of Pennsylvania reviewed my test results and urged me to get a second opinion with a gynecological oncologist —a specialty that I did not know existed. She said she wouldn’t even do this surgery and that by having a Gyn-Onc perform it, my outcome would be at least 33% better. She helped me find one in the Seattle area.

Fortunately, I was able to see this specialist before my already scheduled surgery. She immediately agreed to take my case and scheduled surgery for the following week. This doctor confirmed that I had complex ovarian cysts but said that she could not determine if there was any malignancy until surgery, when they would do the pathology. Urging patients to see gynecological oncologists is one of the most important things that can be done to save women’s lives. I was scared — when I went to see my primary care physician for my annual physical, I thought I was a healthy 50-year-old! I was training to climb Mount Rainier to celebrate this landmark birthday.

During surgery it was discovered that I had high grade ovarian cancer stage IIc. I was completely debulked in the pelvic area (ovaries, fallopian tubes, cervix, omentum and uterus are removed and the entire abdominal cavity and organs are washed to remove cancerous cells). Three weeks after surgery I started a six-month chemotherapy regime of paclitaxel and carboplatin. It was hard on my body — I became anemic, had to have blood transfusions and experienced a level of fatigue that I never knew existed. I saw an acupuncturist on a regular basis throughout chemotherapy to help me stay as healthy as possible. I continued to work full time and care for my family throughout the duration of my treatment — even though I was tired, overwhelmed and scared. Cancer and the treatments take a big toll on the body, mind and soul.

Halfway through chemo, I had genetic counseling and decided to take the BRCA1 gene mutation test. I tested positive — most likely because of my Eastern European Ashkenazi Jewish heritage. There is a history of breast cancer, pancreatic cancer, colon cancer and brain cancer in my family. My older brother died from a glioblastoma and while I am the first in my family to test for the BRCA1 gene mutation, I believe that he may have carried it as well. As a result of my BRCA1 status, I had a prophylactic mastectomy and breast reconstruction in 2010. It’s a decision that I don’t regret.

I am an active ovarian cancer survivor research advocate. I participate in clinical trials for OVCA survivors. I teach yoga and mindfulness practices at yoga retreats for cancer survivors including River Discovery in Idaho and Camp Mak-a-Dream in Montana. I participate in Ovarian Cancer Research Alliance’s (OCRA) Survivors Teaching Students Program at the University of Washington Medical Center. I am a peer mentor for Imerman’s Angels, Sharsheret and OCRA’s Women to Women Program — helping other women navigate their OVCA journey. I am a survivor ambassador for the Rivkin Center, the Clearity Foundation, Amy Krause Rosenthal Foundation and the Powell Drescher OVCA Research Foundation — all nonprofits that are dedicated to advancing research for ovarian cancer. I am an OVCA Advocate Leader for OCRA’s Advocacy Program, which enables me to use my personal experience to ensure that OVCA research continues to be funded on a national level. I serve as a patient research advocate on the Society for Immunotherapy of Cancer (SITC) Education and Training Committee.

I am a dedicated consumer reviewer for the Department of Defense’s Ovarian Cancer Research Program (2020-Present.) I attended the 2023 and 2024 annual meetings of American Association for Cancer Research as part of the AACR Scientist↔Survivor Program. I attended the 2024 ASCO annual meeting as part of ASCO’s Conquer Cancer Scholarship Program. In October 2023, I presented at the Ovarian Cancer Academy’s retreat and at the AACR Special Conference on Ovarian Cancer in Boston. I recently graduated from the National Breast Cancer Coalition’s 2024 Project LEAD Institute with my focus being the connection between breast and ovarian cancer. I will be presenting a poster at the AACR/Rivkin Center’s Conference on Ovarian Cancer in Seattle in September 2024.

I attend research conferences and present posters because I believe it is critical that the voices of survivors are heard and included in research studies. I have a passionate voice, and I want to utilize my survivorship in a way that will have an impact on discovering effective tests for early diagnosis and treatment of Ovarian Cancer. My survival provides a voice for women facing an OVCA diagnosis. The future is now.

Here is a video that I created to help bring awareness to the importance of genetic testing: https://www.youtube.com/watch?v=Fm72svK2zKw

I celebrate my 15 year “cancerversary” in July 2024. I hope one day there is an effective early detection test as well as better treatment options for ovarian cancer. Right now, I am “dancing with NED” and every day I learn to live with my “new normal.”

I hope that you will share this information with friends and family. Be proactive with your health. Knowledge is Power.

Learn and share the B.E.A.C.H. symptoms

B = Bloating
E = Early satiety or feeling full quickly
A = Abdominal and/or pelvic pain
C = Changes in bowel and bladder habits
H = Heightened fatigue

Ovarian cancer facts

– Number 1 deadliest gynecologic cancer with no reliable screening

– 1 in 75 women develop the disease in their lifetime

– Over 70% of women are diagnosed at an advanced stage

– Every woman is at risk of ovarian cancer. Every person with ovaries is at risk of ovarian cancer

– Genetic mutation such as BRCA and strong family history may increase risk of ovarian cancer

Ovarian cancer prevention

– No reliable early detection test for ovarian cancer exists today

– Breast feeding and birth control pills significantly lower the risk of ovarian cancer

– Learning and understanding family history and genetics is an important step toward prevention

– In the absence of a test, awareness is best

– Ask about ovarian cancer at your well woman visits

— By Deborah Binder

Edmonds resident Deborah Binder writes the Healthy Eating and Restaurant News columns for the My Neighborhood News Network.