Working together for 12 years to raise awareness
If you would like to get involved or would like more information about Ovarian Cancer Awareness, please email Kari Johnston
Gwendolyn (diagnosed at age 27, stage I)
I lost my baby sister to a recurrence of Ovarian Cancer and Hepatitis. She was 44. My lifelong friend, Aliyah suffered through four recurrences of ovarian cancer. She left a husband and four children, including 13 year-old twin girls. This just shouldn’t happen. We have lost many members from the Ovarian Cancer Network. I refuse to allow folks to continue calling this disease "The Silent Killer!" No, it speaks loud and clear!
At age 28, after suffering physically and emotionally, I was diagnosed with Ovarian Cancer. For a year, my complaints of severe pain, weakness and irregular menstrual cycles, were classified as "Young Mother’s Syndrome". In other words, all in my head! I experienced bouts with nausea, diarrhea and constipation. I lost weight. I had fainting spells due to extreme fatigue and blood loss. I was told a past eating disorder had returned. I knew this wasn’t true. My menstrual cycle continued to be irregular and the pains were unbearable.
A doctor from Columbia was assigned to the hospital at Ft. Riley, KS. He saw me in the ER, admitted me for a laparoscopy. A cyst on my right ovary had ruptured. A second cyst was suctioned. A biopsy revealed Stage 1 Ovarian Cancer. At this stage, there is a 90% survival rate with treatment. I refused treatment, because it was discovered I was pregnant. I was not going to abort a child I was praying for. By the Grace of God, my baby and I survived.
Gwendolyn starred in one of the first television spots that the Ovarian Cancer Awareness Coalition created.
Patsy (diagnosed at age 36, stage III-C)
In the spring of 2001, I had a month-long menstrual period, and was diagnosed with an ovarian cyst. I was given an oral medication to dissolve the cyst, and my periods returned to normal.
During the following summer, I had several odd, unrelated symptoms that included numbness in my fingers, ocular migraines, superficial phlebitis in my leg, and even an irregular heartbeat. I went from doctor to doctor trying to figure out what was wrong with me. I was gaining weight and I had very little energy.
In late September of 2001, I had my regularly-scheduled ob/gyn appointment, but my cancer still went undetected. In late October, I began to feel a slight pressure on my bladder; after going back to the oby/gyn I was told I had a mild urinary tract infection, and given medication.
Two weeks later, my symptoms did not go away. It was not until I was given a transvaginal ultrasound that a large tumor on my ovary was discovered. After emergency surgery, I was told that it was possibly cancerous, and that the 7" tumor had burst as it was removed from my body. There was an additional mass attached to my bowel.
In November of 2001, I underwent a complete hysterectomy and staging surgery. To better my chances of survival, I participated in a clinical trial study, and had 15 rounds of chemotherapy.
Today I am in remission. Having this cancer has made me realize how fortunate I am to live in this day and age, to have received such excellent medical care. Also, how fortunate I am for the love and support of family, friends, doctors and nurses. I urge all women to be pro-active in their health care and to make use of every test available.
Collette (diagnosed at age 30, stage I)
At age 30 I was diagnosed with Ovarian Cancer. I was fortunate enough to be diagnosed in Stage 1A, the earliest stage. My only symptom was a swelling in my abdomen which at first I thought was due to weight gain. I underwent surgery which was followed by four rounds of chemotherapy.
I believe that goodness comes from every bad thing that a person experiences. My having had cancer, has elevated my appreciation for family and friends and it brought us all closer together. It has also given me the knowledge to educate those around me as to the importance of yearly check-ups.
Karen (diagnosed at age 40, stage II-C)
It was the summer of 2000, the year I would be turning 40. My clothes were getting tight at the waistline, I was experiencing discomfort and indigestion after eating, and was falling asleep on the train ride home from work in the evenings. I thought middle-age was making itself felt for the first time. So I bought loose dresses instead of slacks, kept Tums and Rolaids at the ready, and learned to enjoy the snooze at the end of the work day. It wasn’t until I tried to dance with my 3-year old daughter on the beach one July day that I realized something was wrong. My belly felt like a water balloon as I swayed to the music – unevenly weighted and shifting as I did.
I phoned my gynecologist, as I was due for an appointment anyway. They did a physical exam and ordered a complement of bloodwork. Days later, the doctor phoned to tell me my CA-125 counts were high – 275 vs. a normal count of 35 or lower – and asked me to come into the office immediately. An ultrasound revealed a tumor was growing in my abdomen. Surgery a week later confirmed the diagnosis of ovarian cancer. And the "water balloon" sensation I had in my swollen belly was attributed to 4 1⁄2 liters of ascites fluid that had built up because of the tumor.
Initial surgery was followed by 6 rounds of chemotherapy. Second-look surgery was combined with a hysterectomy and removal of my ovaries. This all ended just before my 40th birthday. Suddenly, 40 years felt like such a blessing!
Through the grace of God and the tireless efforts of the wonderful doctors and nurses who diagnosed and treated me, as well as the tremendous support of my family and friends, I am now marking the 5th anniversary of that diagnosis – with no evidence of recurrence.
Lenore (diagnosed at age 62, stage III)
Lenore Jackson fought her nine year battle with ovarian cancer with strength and grace. She shared her story with us in an effort to help others meet this disease with the same resolve. We thank Lenore and her family for allowing her story to be a source of strength for other women.
In the summer of 1996 I had been feeling bloated with stomach pains and cramps. My primary care doctor couldn’t find anything wrong. The pains continued to get worse and my daughter brought me to the emergency room at the Beth Israel. A CT Scan revealed Stage 3 ovarian cancer.
Within weeks I underwent surgery to remove my ovaries and the tumor. The surgery was a success but revealed that cancer had metastasized in the form of "sprinklings" in my abdomen. While the sprinklings could be shrunk by chemotherapy, they would grow back. My cancer would be chronic and my prognosis at that time was one year.
Seven years later, I am still here. I travel several times a week to Beth Israel for chemotherapy, bloodwork, and various other forms of treatment. Hair loss, waiting for hair growth, hair loss again have become a way of life. I have also discovered that my ovarian cancer is directly linked to my mother’s breast cancer and my aunt's breast/ovarian cancer. Genetic testing has shown that I have the BRAC2 gene for ovarian and breast cancer. This information will help my daughters and their granddaughters protect themselves against this disease.
Thanks to the constant support of my family, doctors, nurses and friends, I have been able to maintain a positive attitude and most importantly, a sense of humor and appreciation of life.
Mary (Dana-Farber Cancer Institute patient)
Two days before her 51st birthday, Mary was diagnosed with ovarian cancer. Watch her story and find out about ovarian cancer symptoms from Mary's oncologist at Dana-Farber, Dr. Ursula Matulonis. By clicking this link, you will be leaving the Ovarian Cancer Awareness website and going to the Dana-Farber Cancer Institute website.
Visit our coalition members for more information: