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Perspectives

Previvor: An Oncology Nurse’s Story of Cancer Risk Reduction Through Genetic Testing

Joanne Kelly
CJON 2018, 22(3), 247-248 DOI: 10.1188/18.CJON.247-248

My mother was diagnosed with triple-negative breast cancer in 1998 at age 48. Her younger sister has been diagnosed with breast cancer at age 33 but ultimately died of ovarian cancer at age 47. Her mother died of ovarian cancer at age 47. I knew my fate. Meanwhile, as the medical world around me kept turning, the medical-surgical floor on which I worked became an oncology floor. This was not part of my plan.

Would you get on an airplane if you were told that it had an 87% chance of crashing? Hold that thought.

I graduated from nursing school in 1997. I wanted to be a critical care or surgical nurse, but first I had to fulfill the general/medical-surgical experience requirements. As it turned out, I never did work in critical care or surgery. Was it a coincidence, or was it divine intervention?

My mother was diagnosed with triple-negative breast cancer in 1998 at age 48. Her younger sister had been diagnosed with breast cancer at age 33 but ultimately died of ovarian cancer at age 47. Her mother died of ovarian cancer at age 47. I knew my fate. Meanwhile, as the medical world around me kept turning, the medical-surgical floor on which I worked became an oncology floor. This was not part of my plan.

In 2000, I saw a genetic counselor after having what ended up being a benign mass removed from my left breast. Because of my significant family history of breast and ovarian cancer, I could continue surveillance every six months as I had been doing, or I could consider genetic testing. I defensively left that appointment and continued with surveillance. I was not ready for genetic testing to potentially confirm what I had suspected.

Fast-forward eight years. I have a husband and two boys. I became OCN®-certified, started a new job as a blood and marrow transplant coordinator, and met a genetic counselor working at the same hospital. Perfect timing. I was ready to know my risk of developing cancer, and I decided it was time to pursue genetic testing. My mother, a 10-year breast cancer survivor at that time, was tested first and tested positive for a BRCA1 mutation. That meant there was a 50% chance that I, too, had the same mutation. I had already spent months researching, talking to physician colleagues, and preparing myself to face what was potentially in front of me. On October 28, 2008, my genetic counselor handed me my results. The eye-catching bold capital letters said “positive for a deleterious mutation” (BRCA1), meaning I had an 87%–90% chance of developing breast cancer and a 40%–50% chance of developing ovarian cancer. Despite already deciding that I would pursue risk-reducing surgeries if I tested positive, seeing those results was crushing. The first thing my husband said was, “When is surgery?”

There were various positive and negative responses to my decision, but my husband said it best when he said, “You have the chance to dodge a bullet coming straight at you. Not many people get that chance.” He would know. He is the top prosecutor in a county that has one of the highest murder rates per capita. A few months after I received my results, at the age of 32, I underwent a prophylactic bilateral mastectomy with expanders, followed by implants and nipple reconstruction. I then underwent a prophylactic total abdominal hysterectomy with bilateral salpingo-oophorectomy at age 35. The mastectomy and reconstruction process took an entire year. Also, I can easily say that menopause is no friend of mine. I had to wrap my brain around my new reality . . . my new normal. In fact, it is still a work in progress.

Whether I see my scarred physical appearance in the mirror, or deal with the ill effects of menopause, I cannot help but be reminded every day that one piece of paper with bold capital letters on it gave me the tools and the power to change my future. My risk of developing cancer is now about 3%. I am proud to call myself a previvor: a survivor of a predisposition to cancer.

I do not travel this journey alone. Thousands of men and women face hereditary cancer. I am incredibly grateful to be able to support and empower others as a personal resource for my genetic counselor, colleague, and friend, Suzanne Mahon, RN, DNSc, AOCN®, AGN-BC, and as a peer navigator volunteer and community liaison with FORCE (Facing Our Risk of Cancer Empowered), a national nonprofit organization devoted to hereditary breast, ovarian, and other related cancers (www.facingourrisk.org).

Again, I ask, would you get on an airplane if you were told it had an 87% chance of crashing? Personally, I would rather get on an airplane that has only a 3% chance of crashing so that I can continue to travel through this extraordinary thing called life. Now, about 20 years after graduating from nursing school, I can look back and understand the blessings that becoming an oncology nurse unexpectedly gave me. Coincidence? I think not.

About the Author(s)

Joanne Kelly, RN, BSN, OCN®, is a blood and marrow transplant coordinator at Saint Louis University Hospital in Missouri. The author takes full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. Kelly can be reached at jkelly0809@yahoo.com, with copy to CJONEditor@ons.org.