Angelina is Not Alone
|by Frances Joyce, June 2013|
News of Angelina Jolie’s decision to have a prophylactic bilateral mastectomy with reconstruction and a hysterectomy after testing positive for the BRCA 1 gene mutation that can cause breast cancer and ovarian cancer spread like wildfire through newspapers, television, and social media. Jolie’s mother died of ovarian cancer at age 56. Jolie, a mother of six, is 37.
Many people consider her brave. A breast cancer survivor who writes a blog about breast cancer was less than kind. She theorized that Ms. Jolie could have chosen a less “barbaric” treatment option. She also worried that women would race to their doctors demanding to be tested for the BRCA mutation. After reading her comments, I felt it was time to step in and offer my opinion as a breast cancer survivor and friend to a woman who tested positive for the BRCA 2 gene mutation.
I was never tested for the BRCA 1 or BRCA2 gene mutations. Though I was only 47 when I was diagnosed, I had no history of breast cancer or ovarian cancer in my family, and my ancestry did not put me in a higher risk category for the mutation. Testing wasn’t indicated for me, so my doctors didn’t recommend it.
Kathy Kramer Pattak’s grandmother died of breast cancer. Her mother and her aunt both were diagnosed with breast cancer. Both died of ovarian cancer. In addition Kathy’s family is Ashkenazi Jewish from Central and Eastern Europe. Ashkenazi Jews have a five time greater risk of carrying the BRCA 1 or BRCA 2 gene mutations than the general population. Women of Norwegian, Icelandic, or Dutch descent also have an increased risk of carrying the gene mutation.
It was these combinations of risk factors that lead to Kathy’s doctor to recommend that she consider being tested and consider risk lowering surgical options.
Kathy discussed the risk factors with her sister, Robin and her cousin Lynn. At the time no one was ready to be tested. Robin, who lived in the United Kingdom, heard about a testing program for women with significant risk factors of carrying the BRCA 2 gene mutation. She applied to the program and was accepted. When her test came back positive, she urged Kathy and Lynne to be tested.
“Get your head out of the sand,” she urged, but Kathy and Lynn refused to be tested.
According to Robin, her husband’s support was invaluable.
“Although I was absolutely certain in my head I would have the bum gene, I’m so glad he came with me to get the result. I think your head plays games with you. With bravado I knew and said I was sure I had the bum gene, but now I KNOW I must have had a little hope that I didn’t, because when I got the positive result of the mutated gene, I actually was quite shocked and a bit dazed and so glad my husband was there with me and to take me home.”
After reviewing her test results and options with her doctor and her family, Robin didn’t race to have surgery. About a year after she was tested, Robin read a Philadelphia Study that indicated having a hysterectomy could significantly reduce her risk of developing Breast or Ovarian cancers. The risk reduction made sense and in early 1999, she had a hysterectomy. In 2006, she opted to have a bilateral mastectomy to further lower her risk of developing breast cancer.
Robin had very large breasts which made preventative screening methods more difficult and less accurate. She opted for the DIEP flap Breast reconstruction which moves tissue from your stomach to your chest area to create new breasts. The surgery is very involved and has a longer recovery period than implants, but the breasts tend to feel more natural. The breasts will also change size if you gain or lose weight.
“I have 2 daughters aged 25 and 28. They are not ready to deal with this yet but are well aware that it is something they will eventually need to do. In our family the breast cancer never hit earlier than 40s so they probably have time to be tested. Personally I wanted to wait until after I had children and they may wish to do this too. One thing I am proud of is that the attitude both my sister and I demonstrated have set really good and positive examples for them.”
In August of 1999, Kathy heard about a study being conducted at Pitt. The purpose of the study was to track the psychological impact of genetic testing on women. Kathy would be tested for the mutation and her reaction to the test results would be carefully monitored. After receiving a positive result, Kathy had a hysterectomy in October 1999.
“My doctor and I had discussed a hysterectomy for years as an effective way to reduce my risk of ovarian and breast cancers, he wanted me to wait until I was closer to menopause. At almost 48, I felt ready. I was okay with the hysterectomy. I was finished having children and tired of being screened every three months for ovarian cancer. I still wasn’t ready to even consider a mastectomy at the time.”
Lynn refused to be tested for the gene mutation until 2006, but she underwent a hysterectomy in 1991 shortly after her mother was diagnosed with ovarian cancer. She tested positively for the BRCA 2 gene in 2006, and five years later she had a prophylactic bilateral mastectomy with reconstruction. Lynn’s brother still refuses to be tested even though men with the BRCA 1 or BRCA 2 gene mutation have an elevated risk of developing breast cancer, pancreatic cancer, testicular cancer, and early on-set prostate cancer. Lynn also has a son who has not been tested.
At the suggestion of her oncologist, Kathy consulted a plastic surgeon to learn more about mastectomy and reconstruction. After careful consideration, she opted for a prophylactic bilateral mastectomy in November 2005 with delayed reconstruction using implants. Kathy’s husband Alan has been supportive of her decisions. His grandmother also had breast cancer. At some point, Kathy will urge her son Corey to be tested.
Kathy, Robin and Lynn received love and support from their families and friends which helped them along the way.
“My biggest fear about getting tested was what would I do with the information? Once I knew for sure that I carried the gene, I didn’t run out and have surgery. I continued to be monitored and screened while I took steps to educate myself about my risks and options.”
If you test positively, you do not have to do anything. You can wait it out. Not everyone who carries the gene mutation develops cancer. You have between a 50-60% chance of developing breast cancer by the age of 50 and an 87% chance of developing breast cancer by the age of 70. Your risk of ovarian cancer is 15-40%.
There are lifestyle choices every woman can make to reduce her risk of cancer whether she carries the BRCA 1 or BRCA2 or not.
- Don’t smoke and limit or refrain from drinking alcohol.
- Exercise and maintain a healthy body weight.
- Eat a healthy diet
- Get adequate rest
- Know your family health history
Kathy, Robin, Lynn, and Angelina all watched loved ones die of cancer. Having lost my dad to bone cancer, I know how devastating that can be and how powerless one is to stop the suffering. When I was diagnosed with cancer, I didn’t want my sons to have to go through what I did. It guided my treatment choices just as it factored into the choices made by Kathy, Robin, Lynn, and Angelina.
What Kathy, Robin, Lynn, and Angelina also share is the desire to help other women who are BRCA 1 or BRCA 2 positive. Angelina came forward and they have come forward to offer their assistance.
“Don’t bury your head in the sand. Have the test,” advised Robin. “If it is positive for the mutated gene, talk to people who have had a double mastectomy. I’m willing to talk to anyone. Ask them what they wish they had known before they had the surgery. Ask about their recovery. Get a really good understanding of the various methods available and pros and cons of each.”
Kathy added, “I agree totally with my sister. I too am willing to speak to anyone who is considering the testing and surgery. I just wish I had had people willing to talk to me back in 2005. There are lots of breast cancer survivors who I could have talked to, but I needed someone who was in my situation. I have since spoken to others who had testing and/or surgery.”
According to Lynn, “Get tested and be carefully screened for breast cancer every year using MRI and mammography; have a hysterectomy as soon as possible.”
For anyone worried about the consequences of genetic testing, GINA (The Genetic Information Nondiscrimination Act) prohibits discrimination based on genetic information for health insurance or employment. It does not cover life insurance, disability insurance, and long term care insurance. It also does not cover military personnel. Many states have strong protection laws and GINA sets a minimum standard that must be followed by all states.
For additional information about the risk factors associated with the BRCA1 and BRCA 2 gene mutations, go to the National Cancer Institute at www.cancer.gov/cancertopics/factsheet/Risk/BRCA