Many people don't realize how isolating an ovarian cancer diagnosis can be.
For a woman who receives an ovarian cancer diagnosis, it can feel like a death sentence. It's the deadliest form of reproductive cancer; approximately 75% of patients with ovarian cancer have stage 3 or 4 of the disease. The five-year survival rate for stage 3 and 4 of the most common type of ovarian cancer ranges from just 17% to 39%, according to the American Cancer Society.
Though family and friends may provide plenty of love and support to a woman diagnosed with ovarian cancer, they might have a hard time relating to her struggle. This makes ovarian cancer a potentially isolating and very scary disease.
That's why Mount Sinai Hospital in New York City has a program called Woman to Woman, which provides one-to-one peer mentoring and support to women who are being treated for gynecologic cancers, from women who have survived gynecologic cancer.
“A person who can provide the best support to someone who is newly diagnosed is someone who has been in that seat,” explains Rachel Justus, licensed clinical social worker and program coordinator for Woman to Woman. And as many women can attest, having someone provide support in whatever way might be useful to the patient (patients may request email or phone-only interactions, or even someone to come to their chemotherapy sessions), makes a huge difference in treatment. “And these relationships can last for years and years,” adds Justus.
These five women have all been diagnosed with ovarian cancer, and are all a part of Woman to Woman. Here, they share what it was like to discover they had this deadly disease.
She found blood in her urine
“Every time I went to see my gynecologist, he said I was in perfect health. And then one day, I found a little bit of blood in my urine, and I thought, that doesn’t make sense, I’ve been feeling healthy. So I went for a checkup, and they recommended that I get imaging to make sure I was okay. But they found something in my right ovary, and the oncologist explained that it was an aggressive, stage 2 tumor mass. Treatment was very tough, but if I didn’t have the support from my friends, my sister, and Marilyn [Melinda’s Woman to Woman mentor], I don’t know if I would’ve been able to survive. Now I tell all my girlfriends to go for their annual checkups no matter how busy they are—your life is more important.” —Melinda Eng, participant in Woman to Woman and still receiving treatment for ovarian cancer
She was diagnosed early
“I was diagnosed early. The only reason that I’m still standing here is because I insisted on having a CA-125 blood test. Even though the doctor said I didn’t need it, it was really important to me. It’s important for women to be their own advocate...you can be your own advocate. I think that helped me.”—Marilyn Aronson, 22 years cancer-free and Melinda Eng’s mentor in the Woman to Woman program
She felt pain in her abdomen
“I felt something was not right. I had a dull pain in my lower right quadrant. It did not go away for a week. Every doctor I went to said it was nothing, but I asked them to view it within the framework of family history. Both my mother and grandmother had breast cancer and I was being watched closely. Mine were modest as symptoms ran.”—Andi Licari, 12 years cancer-free
Her mother died of ovarian cancer
“I was considered high-risk because my mom passed from ovarian cancer. I was having bi-annual pelvic sonograms and CA-125 blood work for 10 years prior to my diagnosis. Then, my CA count rose and my ultrasound showed cysts. My cat scan was inconclusive, but I had severe abdominal cramping and painful intercourse.”—Robin Findling, 14 years cancer-free
Her symptoms seemed innocent at first
“I first went to see my gynecologist because I had some bleeding. She did an exam and took a swab to see how much bleeding there was. She thought it was external because she didn’t see much with the swab. She had me go for an ultrasound, which just reported a cyst—innocent most of the time. The lab wanted me retested in three months. After a biopsy and an abdomen scan, they found that I had a rare form of uterine cancer and fallopian tube/ovarian cancer. I was diagnosed at stage 3B and grade 3. Pretty scary stuff.”—Susan Engal, two years cancer-free