The Previvor Lifestyle

Written by Cofounder, Sheila Adams Gardner

This week I had my one year check-up with my nurse practitioner at Inova Saville Cancer Screening and Prevention Center. I connected with the center last year after learning about my ovarian and breast cancer related gene mutation, RAD 51D. Although I chose prophylactic surgeries to manage my cancer risks, I felt a need to have an anchor in a cancer prevention center to stay abreast of any changes in the recommended care.

Almost one year post double mastectomy and reconstruction, I was excited about the appointment. We discussed the recent revisions to the data for my gene mutation; reviewed my schedule for routine surveillance for colon and skin cancers, and made my appointment for next year. As I left the center, I felt flooded with emotions. I felt proud that I had struck cancer FIRST. My prophylactic oophorectomy and breast surgeries ensured that I will never get ovarian cancer and reduced my chances of getting breast cancer by 95%. I felt supported having added a cancer prevention team to my yearly healthcare schedule. I felt grateful to be thriving with RAD 51D—managing my risks for cancer and staying ready to fight. Being a “Previvor” is more than just being a person with an elevated risk of developing cancer, it is a lifestyle of proactive cancer prevention. Knowing about your elevated risk makes you a Previvor. Managing that risk turns a Previvor into a Thriver! Join the fight. KNOW YOUR RISK. MANAGE YOUR RISK. BEAT HEREDITARY CANCER!

National Previvor Day!

Written by Cofounder, Sheila Adams Gardner

A PREVIVOR is someone who has a higher risk of developing cancer, but does not have the disease. My sisters Patricia, Jacinta and I consider this identity one that EMPOWERS us to fight cancer with every tool available.—To change our family history of cancer to a story of triumph. This year marks the first Previvor Day after completing our major prophylactic surgeries in 2023. We have learned a lot. Most importantly, we’ve learned that the fight against cancer never ends. This year, we focused on informing family members of our gene mutation, RAD 51 D so that they too can learn their risks for cancer and arm themselves. We learned that we inherited the gene mutation from our father and that some of our children are also previvors. KNOWLEDGE IS POWER. Although no one wants to have an increased risk of cancer, knowing about the elevated risk gives us a “VIP Card” to get the necessary healthcare to STRIKE cancer FIRST through regular screening to detect cancer at a treatable stage; prophylactic surgery to eliminate cancer risks; in vitro fertilization to ensure descendants are born free of the gene mutation, and so many more tools we have yet to discover. Being a previvor does NOT mean we will develop cancer. In fact, 90% of all cancers are NOT inherited. Being a previvor is an opportunity to take action and BEAT CANCER.

National Previvor Day is part of National Hereditary Cancer Week, (September 29 – October 5), which honors everyone with an increased risk of cancer because of their family history or an inherited gene mutation linked to cancer.  This week, join us as we honor all Survivors, Previvors, Caregivers and family members in our community of FIGHTERS and THRIVERS.

I am my Sister’s Keeper

Written by Cofounder, Sheila Adams Gardner

One year ago this week, my sister, Patricia and I had breast surgeries within days of each other to reduce our elevated risk of developing triple negative breast cancer because of our inherited gene mutation, RAD 51 D. I had a breast lift in preparation for my double mastectomy and reconstruction. Pat had a DIEP flap mastectomy and reconstruction. Soon after our surgeries, we met on a FaceTime call. We laughed as we played post breast surgery “Show and Tell.” Our sister, Jacinta was there too, admonishing us about raising our arms too high and irritating our scars. Having had her double mastectomy and reconstruction 12 years earlier, Jacinta’s personal experience and emotional support were immeasurable. Our bond as sisters was strengthened by our shared identity as “Previvors”—(Survivors of a predisposition to cancer).

Earlier in the year, we each had oophorectomies to eliminate our risk of developing ovarian cancer. Buoyed by our commitment to strike cancer BEFORE it strikes us, we encouraged and annoyed each other until we each completed our prophylactic treatments by the end of 2023. We continue to share cancer screening and prevention practices and encourage each other. Traveling this previvor life journey with my oldest best friends—my sisters, has made the road so much easier. We created Families Fighting Hereditary Cancer in hopes that our story would encourage other families to unite, and fight cancer together. You and your family members can protect yourselves and change your family’s history of cancer to one of triumph though preventive healthcare.

KNOW YOUR RISK - MANAGE YOUR RISK - BEAT HEREDITARY CANCER

Reverse the Curse

Written by Cofounder, Sheila Adams Gardner (Originally written July 2023 for Facing Our Risk of Cancer Empowered (FORCE))

I have long suspected that genetics were behind the half-dozen cancer-related deaths in my family. Nevertheless, I was shocked when my genetic test results revealed that I carry a wayward gene that puts me at high risk for ovarian cancer and elevated risk for breast cancer. My oldest sister Patricia had received the same results two months prior and immediately began prophylactic treatments. After the icicles of shock melted from my brain, I gathered the encouraging words I used to support my sister and anointed myself with them. I was glad to have my lifelong confidant traveling the journey with me, but the feeling of being “cursed” repeatedly crept into my consciousness. Especially when our middle sister Jacinta subsequently learned that she too carried the genetic mutation. We’ve weathered a lot of storms together, including caring for our mother, who chose hospice in her home during her short battle with liver cancer of “unknown origin.” To do nothing to protect ourselves from cancer was never an option.

I learned the term “Previvor” from the organization, Facing or Risk of Cancer Empowered (FORCE) message boards. It gave me an instant sense of belonging as I wandered through the maze of available healthcare choices. The FORCE resources reminded me that I was not alone.

I created Reverse the Curse: A Coloring Book and Journal for Women Fighting Hereditary Cancer during the stressful month-long wait between receiving my test results and my appointments with doctors. Creating designs of beautiful and strong Previvors strengthened me. When I felt overwhelmed with seemingly endless options to consider, I soothed my mind by adding messages to the designs that encouraged me. I reminded myself that knowledge of my gene mutation is an incredible gift—one that my mother and other cancer-stricken relatives did not have. I am now only a third of the way through my prophylactic treatments. Reverse the Curse continues to help me process the bodily changes that have occurred and will occur over the next several months.

I self-published Reverse the Curse on Amazon as a surprise gift to my sisters. All three of us are at different points in our Previvor journeys. I sent the coloring book/journal to each of them, along with a pack of colored pencils. I wanted them to also feel uplifted whenever fear or doubt encroached on the peaceful spaces of their minds.

I am so grateful to my sister Patricia for bravely insisting on genetic testing for cancer. Her courage was the catalyst for reversing the curse for ourselves, our children, grandchildren and generations to come.