Her Story: Aundrea Fuller
In this series, “Her Story,” we hear from breast and ovarian cancer survivors as well as women at increased risk in order to gain greater perspective on their experiences.
My name is Aundrea Fuller and I would like to share my story and family history in the hope of helping someone else who may find themselves in a similar situation.
For years, my mother’s family has referred to the overwhelming occurrence of cancer in the family as the “Quinley Family Curse”. My grandmother died from ovarian cancer at the age of 59. My mother is the oldest of nine children and to date, five of the nine children have had some form of cancer. My mother was diagnosed this year with pancreatic cancer, one of my aunts died from breast and ovarian cancer, two aunts were diagnosed with breast cancer, and one uncle has had melanoma skin cancer. The “Quinley Family Curse” has been passed to the next generation as my sister and a first cousin have both been diagnosed with breast cancer.
In March of 2014, after having several breast biopsies, my surgeon suggested that I proceed with the breast cancer genetic mutation, or BRCA, testing. One of my aunts who had breast cancer tested positive for a mutation on BRCA 1 (define?). I had previously suggested that my sister who had breast cancer be tested and she tested positive for the same genetic mutation as my aunt. So, on March 6, 2014, I was tested. After waiting a long three weeks, my physician called and informed me that I too was positive for the very same BRCA 1 mutation as my aunt and sister.
I thought that I was prepared for my test results, but it affected me more than I thought it would. The news and statistics that confirmed my diagnosis were staggering. My report stated, “…Deleterious mutations in BRCA 1 may confer as much as an 87percent risk of breast and a 44 percent risk of ovarian cancer by age 70 in women…”. I distinctly remember feeling like I had been punched in the gut. I also remember thinking that the “Quinley Family Curse” had been identified and it now has a name, BRCA 1 Genetic Mutation.
I shared my test results with a very close friend who found a BRCA support group at the University of Alabama at Birmingham (UAB). She sent me the information and suggested that I attend one of the meetings. I began a series of emails with the people listed on the support group website. I received several emails encouraging me to make medical appointments at UAB for care. At the time, I was not interested in medical treatment at UAB because I was happy with my medical team in another health care system - I just wanted to attend the support group meetings. Then I received an email that changed everything. One of the nurses from the support group encouraged me to, at a minimum, communicate with Julie Whatley CRNP, who is the Breast Clinic Coordinator for Women’s Cancers at UAB. As I read the email, I erupted in tears and knew that I had to go see Mrs. Whatley. My mother’s sister, who had passed away from breast and ovarian cancer, was named Juliette Whatley and we called her Julie. I felt that it was no coincidence that my aunt who died from breast and ovarian cancer shared the same name with the nurse practitioner at UAB. God was leading the way. I sent an email to Julie Whatley and told her my story and how I felt God had led me to her. Julie was so kind and scheduled my first appointment without delay.
Through attending several BRCA support group meetings and meeting with Julie at UAB, I have learned so much. I had previously undergone a partial hysterectomy and made the decision to have the remaining ovary removed in June of 2014. I wanted to think about the prophylactic mastectomy and to research mastectomy options. I had scheduled an appointment to see a surgeon about my mastectomy, but cancelled it after my mother became ill and was diagnosed with pancreatic cancer. At this time, I have not rescheduled my mastectomy consultation. However, I feel comfortable with my current screening plan. I have a mammogram and a breast MRI yearly, alternating one or the other every six months. I also see Julie for my clinical breast exams every 6 months. I currently plan to proceed with the mastectomy.
Being a patient at the Lynne Cohen Preventive Care Program at UAB afforded me the opportunity to attend a presentation by Dr. Mary Claire-King in November of 2014. In 1990, Dr. King discovered that a single gene on chromosome 17, later known as BRCA 1, was responsible for many breast and ovarian cancers and that as many as five to 15 percent of all breast cancer may be hereditary. I had the honor of meeting Dr. King in person where she took great interest in my BRCA status. It was very emotional to meet the person whose research and contribution in this area may one day save my life.
After my BRCA test was confirmed positive in April of 2014, I felt the need to share what I had learned with my mother’s family. Several months passed and in November of 2014, I learned that a first cousin, Rhonda Daugherty (should we use her last name?), was diagnosed with breast cancer. She was BRCA tested and learned she too had the family genetic mutation. Prior to her breast cancer diagnosis, Rhonda had inquired about genetic testing, but was told since the family cancers were on her father’s side of the family (her father and my mother are siblings), she had nothing to worry about. I had a hard time with her diagnosis. I had this burden to share what I had learned about BRCA with our family, but failed to do so – and then she was diagnosed with breast cancer. I wish I had acted earlier and that just maybe her cancer would have been caught earlier. In talking with my cousin, she too felt the same burden to talk to our relatives. I remember her saying, “we may not be able to prevent breast cancer, but we may save someone’s life”. She is a warrior and a survivor. This past year she has undergone bilateral mastectomies, a hysterectomy and survived chemotherapy.
At the annual Quinley Christmas gathering in December of 2014, my cousin and I shared our stories with the entire family. I prepared a slide presentation about BRCA. I used a pictorial analogy of apples, with good apples representing the BRCA gene being protective and it’s purpose in preventing tumor growth. I contrasted this with a picture of a bad apple to represent an abnormality in the gene preventing it from doing its job.
I also identified those in the family who we felt needed to be BRCA tested. During the presentation, we took all nine of my mother’s siblings and went family-by-family identifying who needed to be BRCA tested. We used the following criteria: anyone previously diagnosed with breast or ovarian cancer with no BRCA testing and all first-degree relatives of a BRCA positive family member. Everyone who met the criteria was given a packet with our family tree for three generations identifying everyone who was BRCA positive, those who had breast or ovarian cancer and their first-degree relationship to those individuals. We also encouraged these individuals to strongly consider purchasing life and cancer insurance prior to testing. We reviewed the cost of the BRCA screening, what Medicare would cover, how to get health insurance to cover the testing and if no coverage options were available, we provided a copy of the financial assistance programs from GeneDX and MYRAID. Prior to the presentation, six family members had already been tested. After the presentation, an additional 10 family members were tested - four were positive for the BRCA 1 mutation and six were negative.
I was not prepared for the lack of knowledge in the medical community regarding BRCA testing. I was in absolute shock at the resistance that some of our family members received from their medical providers regarding administration of the test. One uncle had a physician tell him that he would reluctantly give the order for the test, but did not want the results sent back to his office, stating he did not want to be responsible for the testing or any consequences of the results. One male cousin had a physician refuse to order the test citing that there were people who had committed suicide after receiving the test results. It seems as if the men in the family had a more difficult time getting tested than the women.
During a conversation with my mother, we surmised that the BRCA mutation was passed from my maternal grandmother (Granny Quinley), as she had ovarian cancer. My grandmother also had several sisters who died from breast cancer. While talking about my grandmother’s history, my mother got very upset and said, “Oh, Aundrea, it would just break mama’s heart to know she passed this gene on to us.” My reply to mom was that we are made up of millions of genes and that Granny Quinley gave us one bad gene. All of the others are good and she certainly gave us the gene to fight. As my cousin coined, “We are Quinley Tough!”
All of the five women in my immediate family have been BRCA tested with four testing positive and one, negative. There are currently three living generations in our family with who are BRCA 1 positive.
I will forever be grateful for the work of Dr. Mary Claire-King and others who have given a name to the “cancer curse” of so many families. While cancer is not currently eradicated in my family, we have options and are actively educating ourselves as much as possible.
For those who do not know whether they should be tested or not, let me share this. Knowing that I have the BRCA 1 genetic mutation means this to me:
1. I can benefit from increased surveillance, mammograms, breast ultrasounds, breast MRIs, and pelvic ultrasounds, all covered by my insurance company.
2. Knowing my status and getting more frequent screening means that I am not risking a late stage diagnosis.
3. Knowing my status means that I can share my results with my family so they too may make informed decisions. My BRCA status may save a family member’s life.
4. I realize that I have a high probability of developing cancer, therefore I can mitigate this risk by being healthier, eating better and exercising more.
5. I have made sound financial decisions in my life by making sure I had adequate life and cancer insurance prior to my diagnosis.
I hope in the near future BRCA testing becomes a standard of practice and I pray that a cure for cancer will be found sooner, rather than later. I also hope that in some way my story will help someone who is walking along the same path. I pray for everyone who reads my story that they will glean some helpful information. But most of all, I pray that they find hope.
We are no longer under the family curse, we are Quinley Tough!
Aundrea Fuller is a breast cancer survivor