Personal Story: A young woman’s story of genetic testing and risk-reducing mastectomy
Alejandra Campoverdi comes from a family with three generations of breast cancer. As a former White House aide and active educator in the Latina community, she has openly shared her story of genetic testing, her BRCA2 mutation and her plans for risk-reducing mastectomy at age 39. (6/6/19)
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This article is about:
a well-written story about Alejandra Campoverdi, a young women and advocate with a BRCA2 mutation.
A family history of breast cancer led to genetic testing
Alejandra Campoverdi comes from a family with many cases of breast cancer. While her mother and two aunts are survivors, both her grandmother and great-grandmother died of breast cancer.
Given her extensive family history, Alejandra chose to have genetic testing for mutations in genes that increase breast cancer risk.
She wasn’t surprised when she was told that she had a BRCA2 mutation:
“I remember when the nurse came in to tell me that I’d tested positive. The first thing out of my mouth was, ‘I know,’ because I did. My intuition, coupled with my family history, all but assured me this would be the case.”
Women who test positive for a BRCA or other inherited mutation have a very high risk for breast, ovarian, and other cancers. There are medical options for managing these risks.
Genetic testing
Experts recommend speaking with a health care provider with advanced training in genetics to determine if genetic testing is right for you. These experts can help make the decision about genetic testing easier. The FORCE website has resources for finding a genetics expert.
Breast cancer risk
According to experts, for women with a gene mutation like Ms. Campoverdi, the lifetime risk for breast cancer is up to 70% compared to 13% in women without an inherited mutation. Because of this high risk, women with a gene mutation in BRCA or other genes associated with breast cancer risk have screening and risk-reducing options for managing this risk.
The National Comprehensive Cancer Network (NCCN) is a network of cancer centers that set national guidelines for cancer care. NCCN has guidelines for genetic testing and cancer risk management for breast cancer due to an inherited mutation. These guidelines cover:
- enhanced breast screening
- medications to lower cancer risk
- risk-reducing mastectomy
Other cancer risks
People who test positive for a gene mutation may have increased risk for other cancers.
Women with a BRCA mutation like Ms. Campoverdi have an increased risk of ovarian cancer. NCCN has guidelines for ovarian cancer risk management. Ms. Campoverdi chose to have ovarian cancer screening using a blood test known as CA 125. The use and accuracy of this test for detection of ovarian cancer is controversial.
People who test positive for a gene mutation may have increased risk for additional cancers, including pancreatic, prostate, and others.
The decisions about surveillance and risk-reducing surgery are complex
Initially, Ms. Campoverdi opted for increased surveillance: regular self- breast exams and yearly monitoring by healthcare providers with mammogram, breast MRI and ultrasound.
Alejandra Campoverdi reported that:
“I felt like I was being proactive enough, but it was exhausting to constantly go to the doctor, not to mention anxiety-producing.”
After several years of increased surveillance and discussions with her doctor, Alejandra decided to have a risk-reducing bilateral mastectomy:
“As my 39th birthday approached, it was time.”
A surprise: preventive surgery uncovered early non-invasive breast cancer
“When I was wheeled into surgery in October 2018, I felt confident and empowered. I woke up feeling groggy but relieved that it was all behind me. I had no idea that the most shocking part was yet to come. Six days after my surgery, while I was still bandaged up and had drains coming out of my sides, I received an unexpected call from my doctor. She said the last thing I expected to hear: I had breast cancer.”
Ms. Campoverdi was diagnosed with ductal carcinoma in situ (DCIS). DCIS is sometimes called “stage 0”, non-invasive breast cancer. DCIS is a cluster of abnormal cells that have not spread beyond their origin in the lining of the breast ducts.
For Alejandra Campoverdi, her risk-reducing bilateral mastectomy led to early detection of a small, low-grade DCIS. Her treatment was straightforward:
“I would not need to do any more treatment—no chemo, no radiation, no hormonal treatment necessary. I never thought I’d have my decision validated like that. Turns out, I beat cancer before I knew I had it.”
A voice for other previvors and women of color
There are documented disparities in breast cancer risk, prognosis and access to care for Latina women and other women of color.
As a result of her personal history and experiences, Ms. Campoverdi founded the Well Woman Coalition as a voice for Latina women who have or are at risk for breast cancer. Ms. Campoverdi notes:
“I had good health care, my choice of doctors, and access to lots of information about my options. Yet this is not the case for many, including the women in my family. That’s why I founded The Well Woman Coalition. Well Woman is an initiative to empower women of color to have agency over their own health and healing. The three principles of Well Woman are to arm yourself with information, make empowered choices, and to save your own life.”
In partnership with Basser Center for BRCA at the University of Pennsylvania, The Well Woman Coalition has organized the “LATINX & BRCA” campaign that focuses on BRCA information and Spanish-language materials for Latinas.
Lastly, Ms. Campoverdi points out:
“Treatment versus surveillance approaches are very personal, and each woman should decide what’s best for her. But if you have reason to believe that you may be at a higher risk of developing breast cancer or have several family members who have battled the disease, consider taking a hereditary cancer test.”
What does this mean for me?
- If you have had breast cancer, have a family history of breast or other cancers, you may want talk to a genetic counselor or other health provider with experience in genetics. You may qualify for genetic testing.
- If you test positive for a mutation in a gene associated with breast cancer, you should speak with your health care provider about risk-management options.
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Questions To Ask Your Health Care Provider
- Given my personal and family history, what is my risk of breast cancer?
- Can you refer me to a genetic counselor?
- What prevention options are best for me? What are the risks and benefits of each option?
- When is the best time for me to consider risk-reducing surgery?
Relevance Rating: Medium-High
- This is a well-written personal account of a young woman’s decision to undergo risk-reducing mastectomy.
- Because this is a memoir, it represents one point of view. Furthermore, it is generalizable to women with high-risk mutations (specifically here BRCA2) and is not generalizable to all young women with breast cancer.
Quality of Writing: Medium-High
- This is a well-written memoir of one woman’s personal journey as a BRCA mutation carrier.
- As a memoir, this article does not cite other sources or present other point of view beyond the author’s point of view.
- The article accurately portrays the scientific details about her story. The one possible exception is the description of BRCA2 lifetime risk at 85%. While this may reflect risk based on her personal and family history, lifetime risk for women with BRCA2 mutations is thought to be 45-70% by age 80.
