From the New York Times to the Huff Post, and Feministing, the news is all a buzz with Angelina Jolie’s announcement that she had a preventative double mastectomy. While some of the commentators dismiss the Jolie’s statement as just the voice of a privileged celebratory, Lisa Rezende, a local woman with the BRCA1 mutation, states Jolie’s letter is ‘absolutely fantastic’. For Lisa, Jolie’s and Christina Applegate’s, very public declarations about having a double mastectomy provide a reference point when discussing her own decision.
The decision to test for BRCA mutation
At 37 Lisa was not considered a high risk for BRCA1 mutation. Her mother and grandmother had both had cancer, including ovarian cancer, but their diagnosis in their fifties is not considered a flag for high risk for the BRCA mutation. Following Lisa’s mom’s ovarian cancer diagnosis, Lisa’s midwife at the Birth Center encouraged her to consider an oophorectomy, a procedure where the ovaries are removed. The same week her sister’s gynecologist also recommended she undergo the same surgery. Lisa’s mother, worried that her daughters were about to undergo an unnecessary operation, decided to have the genetic screening test.
After her mother tested positive for the BRCA1 mutation that Lisa followed up with an early mammogram and BRCA testing and found that she carried the mutation and faced an 87% chance of developing breast cancer, a higher chance than a woman who has a non-genetic form of breast cancer has of a reoccurrence. “I had an unfair advantage when considering the results” says Lisa who holds a PhD in Microbiology and Immunology,”I understood what having an autosomal dominant gene mutation* meant in terms of my risk of developing breast cancer.” But while Lisa thought she had prepared herself for the results, when the results arrived she realized that she had been assuming it would be negative. Lisa emphasizes the importance of genetic counseling prior to the genetic screening. “You need to be ready to hear that you do have the gene mutation and know what you’re going to do with that information.“
Karen Narum, Nurse Practioner for TMC for Women’s Breast Center, agrees with Lisa’s sentiment:
The first thing I tell patients who are considering the BRCA screening, is ‘What are you going to do with the results?‘ Not that anyone can truly guess how they will feel once the results are available, but I think it should be contemplated before having the testing. Of course, I let them know about the genetic counselor at the University of Arizona. Genetic counselors are hard to come by. There are probably only a handful in the state of Arizona. Their work is typically associated with research / teaching institutions or labs, and encompasses much more than breast cancer, although some may specialize…the local breast surgeons and breast cancer oncologists provide a great services regarding guiding appropriate patients / families to genetic screenings.
Overall, the majority of women who are diagnosed with breast cancer, DO NOT carry the BRCA mutation. It is estimated that no more than 10% of patients diagnosed with breast cancer carry a BRCA mutation. Which gets us right back to screening! Statistically patients who have a family history of multiple breast cancer or breast / ovarian cancer histories or family members who have had more than one type of cancer may benefit the most from BRCA testing.
Is the BRCA test and subsequent procedures an option only for the rich?
Jolie’s purpose in sharing her experience was to reach out to other women faced with this choice, and her stand is very clear regarding lack of access for many women.
Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.
Lisa is not independently wealthy, but her insurance covered all the procedures. She explains,
Everything was covered including genetic counseling which is absolutely recommended before testing…Under Affordable Care Act (Obamacare), genetic counseling is covered as preventative services for women who meet the high risk criteria. Meeting with a genetic counselor or medical geneticist is essential in making sure women know all of their options, that all the correct tests are ordered, and just to process everything in a longer appointment than one typically gets in a physician’s office.
My mastectomy was not covered on family history or a high risk code alone, I had to reveal my BRCA mutation, then it was covered as was all reconstruction and all followup surgeries from the complications. Ovary and fallopian tube removal covered, as is hormone replacement therapy to manage menopause. Twice yearly ovarian cancer screens (blood work then and now as well as transvaginal ultrasounds before I removed my ovaries), and annual MRIs post-mastectomy have all been covered to date.
What if you’re not insured, or under insured?
The Southern Arizona Affiliate of Susan G. Komen has funded University of Arizona and University Medical Center to provide BRCA1/2 screening, education and tele-genetic counseling for under- and uninsured at-risk individuals in Southern Arizona. The genetic counselor speaks with at-risk men and women from across Southern Arizona. In a recent press release from the Southern Arizona Komen Affiliate, Jessica Ray , the genetic counselor heading up the BRCA testing program explains the importance of Komen’s work here in southern Arizona.
This proves just how valuable the Komen Southern Arizona funding was, that 12 people who otherwise would not have known their elevated risks for breast and other cancers, were helped,”
Ray added, “Many health insurance plans cover the cost of BRCA testing, but there is always a need for funding for those who are uninsured or under-insured. The majority of individuals enrolled received testing that would otherwise have cost them $3,500 each.
The results are in – making a decision
Knowing that she was positive for the BRCA mutation, Lisa had to make a decision as to whether she would undergo a prophylactic double mastectomy or continue with increased surveillance. Surveillance consists of alternating MRI and mammograms every six months. Lisa explains her decision making process:
I know there is a lot of talk in the media recently about the stress involved in false positives in breast screening and whether or not it worth the cases of early cancers caught. I never had a mammogram before my mother’s BRCA1 mutation was discovered because I was not considered high risk, but I can say the week I was waiting for the MRI and results was one of the most stressful of my life. With an estimated 87% lifetime risk of breast cancer, I felt like all I did not know was when I would get breast cancer.When I got my results my daughters were 4 and 1. Three years earlier I had lost a close childhood friend to a non-BRCA cancer. She was a young mother who would have given anything to spend more time with her son. I knew I had been given a chance that she never had, to stop this before it started. When I faced complications as a result of my surgery, Yvonne was never far from my mind. I knew no matter how bad the mastectomy process was, it was better the alternative.I sometimes wonder if I would have gone the surveillance route longer if I did not have kids, particularly given the later age of onset in my family. I guess I will never know.