Lisa: Stage IV Ovarian Cancer

SHARE is deeply saddened by the loss of Lisa Franklin to Stage IV ovarian cancer on June 24, 2015. Lisa died peacefully at her home, surrounded by her loving family. This profile, which shows her relentless efforts to make all women aware of the symptoms and risk of ovarian cancer, was posted shortly after she learned of her recurrence.

She calls it her journey, but it's not a journey that she ever expected to take.

Lisa Franklin has always been meticulous about tending to her health. She never missed a wellness visit. She saw her primary care physician and her gynecologist regularly. And when she started to experience some puzzling symptoms she went for a checkup immediately.

The problem was that her symptoms could have been anything. Gastro-intestinal discomfort, burning and gurgling in her stomach, a feeling something was stuck in her throat, painful intercourse and increased discharge. Was it an ulcer? Was it a parasite she had picked up in Brazil? All the tests were negative. She took Maalox. She became a vegetarian.

In 2013 she ended up in an emergency room in Dallas, Texas, where she was diagnosed with stage IV ovarian cancer in both ovaries, which had spread to lymph nodes, liver and spleen. The largest tumor was on her colon. How could six doctors have missed it?

Since her cancer diagnosis her journey has become a mission—to raise awareness of ovarian cancer in under-served communities. "I have heard women of color saying black women don't get ovarian cancer. Well, I am here to tell them that they do."

There's a long history of cancer in Lisa's family. Because of it she went for a mammography five years ahead of time. "I considered myself proactive but I was just blown away that I didn't have the language to even ask about ovarian cancer testing."

"It never occurred to my doctors—and they were women," she says. "Doctors are the first line of defense and they need to be educated around ovarian cancer." Lisa believes that because this cancer is so silent, it's a very gray area in terms of the diagnosis. She wants to teach women how to bring up the conversation. "Now when I go for tests and blood work, women often ask me, 'tell me how you knew you had ovarian cancer.' They are hungry for information," she says.

"I tell them to ask the doctor to rule it out. If you have those pervasive, vague symptoms that any woman can have—because of menses, bloating, change of bowel habits, frequent urination, feeling full quickly, pain in intercourse—for more than three weeks, and you get no relief from over the counter drugs, you need to go and tell your doctor you need to rule this out. "

This is how Lisa found herself in a hospital in a strange city where she had moved from New York City two years before. She had wanted a change and she thought her money would go further there. She liked the idea that there was an emerging arts scene. A former program coordinator for a College Access program at CUNY, she took educational consulting jobs while she looked for a new position. "My plan was to figure out what I wanted to do," she says. But without steady employment, she didn't have any health insurance.

In that Dallas emergency room Lisa quickly learned that without health insurance in Texas, "no doctor would see me, even when I offered to pay out of pocket."

She returned to New York where New York Presbyterian Hospital agreed to begin treatment even though she had no insurance. (She has since applied for Medicaid.) Lisa began with three months of chemotherapy followed by de-bulking surgery. She then resumed chemo until January 2014. She went into remission in February but by September her symptoms returned.

The doctors offered more chemo. "They were very candid with me. They explained that what usually happens to a woman with advanced stage ovarian cancer is that the first time they aim to cure you. That is the hope."

But with such a brief remission, the doctors told her that her cancer was going to be chronic. The new chemo would act as a form of symptom control. But Lisa decided that since quality of life meant more to her, she would not go back into treatment. Her doctors had a hard time with her decision, but they respected it. Her family, however, was thrown for a loop. "They have had a difficult time accepting my decision." It helped a lot when her family met with her medical team and they came away with more understanding of why she had made this decision.

As a woman, Lisa has been on a quest for women's wellness and wholeness, "what I have been given to do on this earth." The irony of her situation is not lost on her. "How do I get a gynecological cancer when I have been teaching women how to honor one of their most sacred regions? Certain things can't be explained. I just have to accept," she says.

Lisa continues to reach out to other women. Soon after her cancer went into remission, Lisa became a SHARE Ambassador, educating women in under-served African-American communities about ovarian cancer symptoms and sharing her story. She continues to visit community-based organizations and churches to ensure that women have the information she didn't have.

In 2004, Lisa discovered waist beads. "They are from the African diaspora," she explains. "The beads were a way of adorning and affirming your femininity. In Ghana, baby girls are given the beads for protection because there is a myth that it's the beads that give a woman her shape. In Senegal the beads are a sign of sensuality." Lisa organizes waist beading circles where she teaches the history and women make their own beads to help them reclaim their sacredness and life giving, and healing.

But her overarching purpose is as a parent, a mother. Lisa has one son and one grandson. "No other role is as important as forming your child to be a decent human being," she says. Her son does not say much about her illness but he knows she is brave. But she is clear about what she hopes he will take away from her experience. "Even in the face of adversity, we can either shrink and let adversity take us over or we can allow that adversity to let us rise and shine, and use it to propel ourselves to our highest good."

Looking for more information on Stage IV Ovarian Cancer? Check out this webinar on managing recurrence.

Author

Lisa Franklin


  • Ronya

    Namaste Lisa…I shared your testimony with a new friend sharing a very similar experience. She’s praying with you, and asks how you’re doing now. Would hope to see an update.
    Stay blessed, Ronya

  • Maribeth

    Please add shortness of breath to the list of potential symptoms. I was diagnosed with Stage IV metastatic ovarian cancer in February of this year. My only symptom was shortness of breath with activity. I explained it away without really acknowledging it to anyone else; bronchitis or possibly an aspiration pneumonia as I'd recently had a prolonged episode of coughing after swallowing something 'down the wrong pipe.' As a Nurse Practitioner, I had attempted to check my breath sounds. I also checked my oxygen level with a pulse ox at work. Both were unremarkable. I had my boss draw labs, that were also unremarkable, aside from a minor elevation in liver enzymes. It went on for 3 weeks and after increasing difficulty, and no relief from prednisone and an inhaler, I was seen at an outpatient facility and got a chest X-ray. I had a right pleural effusion, which encompassed 3/4 of my right pleura, collapsing the lung.
    I sought care at a hospital in Philadelphia, and was given the diagnosis. I had extensive surgery as there were several small 'implants' of tumor throughout my abdominal cavity. Currently I am having chemotherapy.
    I had NO other symptoms. I want to help educate women as well.

  • Novella

    What a brave, true inspiration you are, Lisa. Your positive spirit in the face of adversity is a true blessing to many. Thank you for sharing and using your experience to bring awareness to our community about Ovarian cancer. My prayer is that you continue to move in the direction that the universe leads you to. I appreciate you and pray that your body continues to fight cancer and win! If you are in need of financial support I'm confident that the community including myself will pull together to support you. With much love and hope for your future. Ashe!

  • Pam Black, LCSW, OSW_C Oncology Social Worker.

    May Lisa and her life be a source of knowledge and courage for women . She will be greatly missed. She is worthy of every honor and respect for the showing us the way to live and to die. May God bless you, Lisa, now always.

  • Julie

    Sending you Prayers and hugs Cheryl.
    I'm awaiting the results of my CA125.. I am shocked at the some of the symptoms of ovarian cancer.. I never dreamt weight gain was one of them .. I was uneducated but not anymore.. If my results are good and my illness turns out to be nothing.. I'm still going
    to educate my daughters/son and family and friends.. Keep fighting lovely xxxx

  • Anonymous

    Hi Sarah,

    You can call SHARE's Ovarian Cancer Helpline at 866-537-4273 and be connected with someone who has taken this drug.

    Beth Kling
    Communications Director, SHARE

National Helpline:
844-ASK-SHARE