Debbie: Ovarian Cancer and BRCA1+

Debbie: Ovarian Cancer and BRCA1+

My history with ovarian cancer began three years before my diagnosis, when my younger sister was diagnosed with Stage IIIC ovarian cancer at the age of 46 in August 2003. I was in the waiting room when her surgeon came out, and the first thing she said to me was that I should have my ovaries removed. This startled me since I was expecting to hear about my sister, who had just had lengthy surgery.

When I returned home to NYC and saw my gynecologist, she recommended that I have my ovaries removed at the age of 50 and CA125 blood tests and trans vaginal ultrasounds annually. I didn't have my ovaries removed, but in the course of the next three years, I saw other gynecologists for peri-menopausal symptoms, and all of them also monitored my high risk status for ovarian cancer with annual blood tests and ultrasounds. None of them recommended that I have genetic testing.

After I was diagnosed with ovarian cancer three years later, I had genetic testing and was found to have the BRCA1 mutation -- which indicates high risk for breast and ovarian cancer. Had I known this, I could have had my ovaries removed or been monitored every 3 months instead of annually. I will never understand why the gynecologists and other doctors I saw did not recommend me for genetic testing. This mutation occurs in about 2.3% of individuals from my religious group, Askenazi Jews, although prior to my sister there were no family members with breast or ovarian cancer. This mutation can be carried by male members to their daughters, which may have been the case in my family.

My symptoms for ovarian cancer started with a slight pain in my left abdomen about a month before I went to a doctor – I thought I pulled a muscle at an exercise class. This was in November 2006 when I was 53 years old, pre-menopausal, married with 2 college-aged sons, and working full-time as a psychiatric social worker. However, by Thanksgiving weekend 2006, I was experiencing severe pain and could not move my bowels. A week after I saw the internist, I was referred to a gynecologic oncologist, and surgery was a week later.

Six months before, in May 2006, my CA125 had been in the normal range (0-35); in December 2006 it was 2400 – that's how aggressive the cancer was. I was diagnosed with Ovarian Cancer Stage IIIC. During surgery, they discovered there were cancer cells on the colon, referred to as a caked omentum, which had blocked my colon and caused the bowel back-up and pain. I recovered well and started chemo in mid January 2007. I received chemo both intravenously and intraperitoneally – directly to the abdomen. I completed 14 of the 18 recommended treatments and stopped due to peripheral neuropathy in my hands and feet – feelings of tingling and pain.

The neuropathy in my hands and feet continued several weeks after the chemo ended and has worsened. I see a neurologist with a specialty in peripheral neuropathy who diagnosed me with chemo-induced severe peripheral neuropathy. I continue to need daily pain medications and regularly do balance and strength exercises to control the symptoms. I enrolled in a clinical trial in June 2007 for a vaccine study to prevent recurrence of the cancer, but dropped out in December 2009 due to the need for CAT scans every 3 months. Still, I will continue in the follow-up phase for up to 9 years. It appears that I was getting the placebo. I have been cancer-free for nearly 3 years.

Due to the BRCA1+ genetic mutation, I am also at high risk for breast cancer. My monitoring regimen has been alternating mammogram and MRI every 6 months rather than a preventive mastectomy. So far, so good – no breast cancer or ovarian cancer recurrence!

Since my diagnosis of ovarian cancer, I have been volunteering for several organizations to raise awareness about ovarian cancer and to support people dealing with the disease. My personal interest is to promote genetic testing awareness for individuals and for medical professionals who see patients with family histories of ovarian or breast cancer. For the Ovarian Cancer National Alliance (OCNA), I am a speaker in the Survivors Teaching Students program, addressing medical, nursing and physician assistant students about symptoms and genetic risk for breast and ovarian cancer.

For SHARE, I serve on the Ovarian Cancer Helpline and as a speaker to community and corporate groups on the risk factors and symptoms of ovarian cancer. It has been fun to participate in large fundraising walks for Revlon's Women's Cancers and for a Brooklyn-based organization called T.E.A.L., which had its first walk in September 2009. Going to Washington D.C. for two summer OCNA conferences was enlightening, and so is reading daily emails from the ovarian cancer listserv on ACOR (Association of Computer Online Resources). All of these activities, plus meeting many wonderful women, have made this experience meaningful and enabled me to take this disease and find purpose in my life.