Today, I got my monthly blood work done at The Ottawa Hospital. My CA125—a measure of the cancer antigen in my blood—was 8, continuing a streak of 3 years and 10 months that my CA125 has been normal (i.e., below 35).

Also today, I contacted the Genetics Unit at the Children's Hospital of Eastern Ontario (CHEO) to enquire about an update to my genetic testing results from 2021. CHEO is the centre of expertise in the Ottawa area for genetic testing. The genetics counsellor to whom I spoke today agreed that it's wise for people found to have a gene change to follow up with their genetics clinic every three years. The purpose of such a follow-up is to check whether new technology, research or knowledge might have led to a new interpretation of past genetic testing results.

As I shared in 2021, I was found to have a pathogenic gene mutation in my BRCA2 gene; pathogenic means capable of causing disease. This gene mutation was likely the cause of my ovarian cancer and put me at significant risk for breast cancer.

I was also found to have another gene variant, this time on my MSH2 gene. However, because my MSH2 variant is of unknown clinical significance—meaning it may or may not cause disease—no further action was taken in relation to my healthcare or testing for family members. The variant was simply noted in the event that research in the future determines that it is a gene change of clinical significance. The next step in updating my genetic testing is a referral to the CHEO Genetics Unit from my doctor—either my gynecologic oncologist who referred me to CHEO in 2020 after the pathology report noted the presence of a BRCA2 gene mutation in my ovarian cancer tumours, or my family physician.

Coincidentally, this week is National Hereditary Cancer Week and today is Previvor Day, at least in the United States. According to FORCE (Facing Our Risk of Cancer Empowered)—a national, nonprofit organization dedicated to fighting hereditary breast and ovarian cancer—the United States Congress passed a resolution 14 years ago to establish the first National Hereditary Breast and Ovarian Cancer Week and National Previvor Day. Four years ago, FORCE renamed the week to recognize and support all people affected by hereditary cancer. In a recent blog post, FORCE Founder and Executive Director Sue Friedman said:

NHCW [National Hereditary Cancer Week] is a chance to educate and spread awareness about hereditary cancer. As many as 90% of the millions of people who have a genetic mutation that causes or predisposes them to cancer are unaware of their risk.

As for Previvor Day, FORCE defines previvors as "people with an inherited mutation, a family history of cancer, or some other factor that increases their risk for cancer." Among the options FORCE notes that previvors can take to lower their risk of developing cancer are "enhanced screening to find cancer early and at its most treatable stage" and "surgery to remove organs at high risk before cancer develops."

I didn't know that I had inherited a BRCA2 gene mutation before developing ovarian cancer in 2020. Had I known, I could have opted to have my ovaries and fallopian tubes removed before the ovarian cancer occurred. But learning about my faulty BRCA2 gene did give me an opportunity to reduce my risk of developing breast cancer. In 2021, when my genetics counsellor at CHEO told me I was at a 50-85% risk of developing breast cancer, I was immediately referred to the High Risk Ontario Breast Screening Program, which entitled me to an annual mammogram and an annual breast MRI. I also began exploring a surgical option. In 2023, I underwent a prophylactic bilateral mastectomy. That surgery reduced my risk of breast cancer to 5-8%. The pathology report following the mastectomy found no evidence of breast cancer in the breast tissue that had been removed. I suppose that would make me an ovarian cancer survivor and a breast cancer previvor.

Despite the knowledge and experience I have acquired on genes and genetic testing in the past four years, I believe there's always more I could learn. So last week, I took part in a webinar organized by Ovarian Cancer Canada called Genetic testing can save lives. As the introduction to the videorecording of the webinar indicates:

Prevention is the best way to save lives from ovarian cancer today. Learn from a genetic counsellor, as well as someone who has gone through genetic testing, about the important role of genetic testing in ovarian cancer prevention.

The webinar answers questions such as:

The session was excellent and would be a good starting point for anyone wondering about genetic testing, particularly in relation to ovarian cancer and breast cancer. The slides used by genetics counsellor Michaela Schellenberg are also available.

Ovarian Cancer Canada is offering a related webinar on November 5, 2024, entitled Surgery to prevent ovarian cancer. It describes the event as follows: "Hear from diverse experts on OCC’s Prevention Task Force, including a gynecologic oncologist, and people with lived experience. Learn about how to navigate risk-reducing surgery for ovarian cancer prevention, considerations for aftercare, menopause, and more." I plan to tune into this webinar as well.

Each month that I receive good news on my CA125, I'm reminded of the curse and the blessing of my BRCA2 gene mutation. Though this faulty gene likely caused my ovarian cancer, it also gave me access to a drug—the PARP inhibitor olaparib—which appears to be keeping my ovarian cancer at bay. And though the faulty gene also put me at a high risk of developing breast cancer, the knowledge of my gene mutation gave me an opportunity to take steps to reduce my risk, including annual screening while I waited for my turn to have a bilateral mastectomy.

I believe that knowledge is power. And, as Robert Boyce said, "Knowledge shared is power multiplied."