As we were reminded just one week ago, even the rich and famous can be faced with agonizing health decisions. In the case of actress Angelina Jolie, the critical question was this: Do I have my healthy breasts removed to reduce my chances of getting breast cancer?
After testing positive for the breast cancer gene, Jolie decided to proceed with the surgery, then shared her experiences in a public statement in the New York Times.
Because she carries a mutation of the BRCA1 gene, her doctors estimated she had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer.
Local breast surgeon Tom Heck thinks it’s “fantastic” that a well-known celebrity like Jolie was willing to go public with the announcement that she’d had a preventive double mastectomy.
“Thanks to people like her, more women will learn about breast cancer risk evaluation and not be afraid to investigate their own possible risk of developing breast cancer,” Heck said. The fear of undergoing the operation will be lessened and women will realize that their feminine image can be maintained.”
Doctors aren’t immune from carrying the breast cancer gene either. Just ask Katrina Paulding, an Englewood family physician whose sister was diagnosed two years ago with bilateral breast cancer. After Paulding tested positive, she decided to have preventive surgery — first she had her ovaries and uterus removed, then a bilateral mastectomy.
“It was a no-brainer for me. I had complete peace of mind about my decision,”she said now. “I wanted to be around for my kids who are teens; God gave them to me for a reason, and I feel I have more to pour into them.”
Paulding says she wants her patients to have her undivided intention, and says that wouldn’t have been the case if she were constantly worrying about breast cancer. As a doctor, she says she has watched others die and knows how real and devastating the issue of genetic predisposition can be.
Now, at 47, she’s willing to talk about her experiences because she believes in “paying it forward.”
“People have helped me avoid bad things by sharing their stories, so if I can do my part to raise the level of alertness and to demystify what is so often a sensitive subject, then I feel I’ve done a good job.”
Process begins with testing
Heck says he always asks questions about personal and family history when he sees a new patient at the Good Samaritan Breast Center. Based on his patient’s responses, he’ll discuss the possibility of having her meeting with a geneticist for a full evaluation of her risks.
“If appropriate, the patient will be offered BRCA testing,” Heck explained. He said it’s important to note that BRCA testing is NOT a screening test but should only be performed on people who meet specific criteria.” If his patient is a carrier of the BRCA mutation, she is then informed of the sobering statistics.
It’s about this time that a woman must decide how she wants to proceed. There are no easy answers.
In retrospect, Faith Rolfes of Englewood says she wishes she had decided differently.
After being diagnosed with BRCA1 in 2009 , she had a preventative hysterectomy and opted to follow the path of heavy surveillance and the drug Tamoxifen.
“In October 2012, I was diagnosed with stage 2 breast cancer,” Rolfes said. ” Hindsight being 20/20, I now wish I would have taken my breasts also when I did my ovaries.”
For Kara Pickrell, at age 30, the question has been especially troubling.
When the Miamisburg woman’s older sister was diagnosed with breast cancer at the age of 34, the doctor suspected that her sister might have the BRCA gene and recommended testing.
“When she received the results that she was in fact positive for the BRCA1 gene, the doctors felt that it was important for my oldest sister and myself to be tested,” Pickrell said. “My oldest sister was done having kids and knew right away that she wanted to know whether or not she had the gene. She went ahead and scheduled almost immediately to be tested and the results were negative.”
But Kara, who had not yet had a child, wasn’t sure she wanted to know whether she had the gene.
“I had a guilty feeling that if I had the gene and then became pregnant, I would essentially be setting my child up to possibly have this life-altering gene,” she said. She debated the decision for months and eventually decided that both for herself and her family she needed to be tested. Her test came back positive.
Her doctor recommended she begin having two mammograms, two vaginal ultrasounds and one MRI every year. He also highly recommended she have a double mastectomy and a hysterectomy as soon as possible.
“I felt a huge sense of anxiety when he said these things,” said Kara, who broke down in the doctor’s office. “How could I talk about these things when I am only 30 years old? My husband and I have only been married less than a year and hadn’t even had our first child yet.”
She and her doctor discussed the pros and cons of waiting. She says he understood her desire to have children and to breastfeed them and suggested she put her decision about surgery on hold. Kara now has a 1-year-old son.
“My husband and I have continued to talk about our future plans and what we think is the best for everyone involved,” she said. “Do we risk waiting a few years to decide whether we want more children or do I go ahead with the surgical procedures to ensure that my son has a healthy mom for years to come? I wish I could say that I have the answer. As of today, I still don’t know. “
Of one thing she’s certain: the surgeries are big decisions and should not be taken lightly.
“What I do recommend is talking to other people in your situation,” she said. “Look online for support groups, call your local hospital and they will connect you with the right resources, go to your library and do research. You will realize that you are not alone and that you are not the only one going through this tough decision-making process. “
Support Groups for BRCA
One of the newest local options is a support group started by Faith Callif-Daley, a certified genetics counselor at Dayton Children’s Medical Center and Ann Lensch, breast care coordinator at Good Samaritan North. The group, which held its first meeting in March, will meet quarterly at various locations and is intended for men and women who have tested positive for a BRCA1 or BRCA2 gene mutation and their family members and supportive friends.
“Over the years there have been many individuals who I have counseled who have tested positive for the BRCA1 or BRCA2 genes,” Callif-Daley explained. ” There are wonderful online support groups and books for families with these gene mutations but after many discussions over time with our patients and our high risk team we realized how valuable it would be to bring people together face-to-face. Our patients told us how challenging it is to make decisions about medical management and that their concerns have changed over time.”
Callif-Daley says she loved that Angelina Jolie shared how feminine and powerful she feels after considering all her options and making the decision that was right for her.
“She echoed what my patients tell me every day when she mentioned how much her love for her children influenced her decision.”
Opting for surgery
Heck says that the most effective way of reducing breast cancer risk for women who carry the gene is by performing bilateral prophylactic mastectomies, which reduces the risk to the 6-7 percent range. He says most patients can have nipple sparing mastectomies where no skin is removed and the nipple and areola are preserved.
“The plastic surgeon then proceeds with reconstruction during the same operation, the cosmetic results are excellent,” Heck said. “Everyone I have operated on has a tremendous sense of peace following the procedure. They also feel empowered knowing that they took control of a very scary situation.”
That’s certainly the way Luann Meador and her family feel about the decisions made by Meador’s 40-year-old niece just a year ago when she had her ovaries removed, a double mastectomy and reconstructive surgery.
“In our family, we had lost my mother, my aunt, and my sister to breast cancer,” Meador said. Four years after her sister’s death they heard the devastating news that her niece had pre-cancerous cells in her left breast.
“She was advised to take the BRAC test, which gave her all of the necessary information — that she had the mutation gene,” Meador said. “As a single beautiful 40-year-old mother of two, there was never a question of what to do; it was always when and how soon! Please use our story to help encourage others.”
Q&A: BRAC TEST AND GENES
We’ve all heard that breast cancer runs in families but what precisely does that mean? To learn more about the connection and about the BRAC test and genes, we talked with Faith Callif-Daley, genetic counselor at Dayton Children’s and Samaritan Cancer Center.
“Family history is a well-known risk factor for breast cancer,” she explained. “At least 20 percent of women diagnosed with breast cancer have some family history of the disease. When a woman has a family history of breast or related cancers her own risk for breast cancer may be increased.”
Q: Exactly which relatives are we talking about when it comes to family history? Does it matter, for example, if my grandmother on my father’s side had breast cancer? Or an aunt? Or a cousin?
A: Your doctors may modify your plan for cancer prevention or early detection based on your family history. Collect the details of cancer diagnoses for at least three generations on both sides of the family. This includes you, your parents, children, siblings, nieces, nephews and grandchildren as well as your aunts, uncles and first cousins on both sides of the family.
Paternal family history is just as important as maternal history. Someone with an affected paternal grandmother and paternal aunt may have as much risk for breast cancer as someone with an affected mother and maternal aunt. Risk generally increases with more affected relatives, younger age of onset of disease and/or closer relationship.
“My Family Health Portrait” is an online tool created by The U.S. Surgeon General’s Office (www.hhs.gov/familyhistory) to create your own medical family tree. Update your family history often and share it with your doctors. Thanksgiving Day has been designated National Family History Day to remind us to talk to our relatives regularly about our medical family history.
Q: What about other forms of cancer in our family. Can that affect my chances of getting breast cancer?
A: A family history of ovarian cancer is strongly linked with increased breast and ovarian cancer risk. Cancers of the thyroid, stomach, uterus, pancreas, bone, prostate, colon, skin and adrenal gland may also be important.
Q: If my mother had breast cancer, what does that mean for me? Does it mean I will definitely get breast cancer someday?
A: When a woman is diagnosed with breast cancer, her thoughts always turn to her daughter. Is breast cancer her destiny? Not necessarily. She may need to be followed more closely as a precaution, but breast cancer need not be her fate. There are many elements to estimating breast cancer risk.
Q: We now know there are many kinds of breast cancer. Does the type a family member had affect what kind I would get?
A: For some hereditary forms of breast cancer, one type of breast cancer may be more common than another, but in most cases a close relative’s form of breast cancer is not predictive.
Q: Does it matter if my mother had breast cancer after menopause or before?
A: Premenopausal breast cancer is more likely to be inherited.
Q: I’ve heard about the BRCA 1 and 2 tests. What are they? What’s the difference between the two? Who should have the test?
A: BRCA1 and BRCA2 are the most common genes associated with hereditary breast cancer. They are very similar and are usually tested together. People with BRCA1 or BRCA2 mutations have significant increased lifetime risks for breast cancer (85 percent for both) and ovarian cancer (50 percent for BRCA1 and 30 percent for BRCA2).
To see who the National Comprehensive Cancer Network considers candidates for BRCA1/BRCA2 testing, see www.nccn.org.
Q: I’ve heard that sometimes insurance won’t pay for that test and that it is quite expensive. What should I do if I want to have it and it won’t be covered?
A: Insurance companies, including Medicaid and Medicare, are actually quite good at covering the testing when it is medically necessary. In most cases, when insurance does not cover the testing it is because there is a low likelihood for a mutation and it is reasonable not to test. In other cases, the testing laboratory, Myriad Genetics, can set up a reasonable payment plan. Patients without insurance who meet specified financial and medical criteria can have testing free of charge through the lab’s Financial Assistance Program.
Q: What kinds of studies are being done in this field and what might we learn from them?
A: The most recent studies emphasize personalized care. For instance, clinical trials are studying whether PARP inhibitors may be more effective than standard chemotherapies at treating cancers in patients with BRCA1 or BRCA2 mutations. Also, additional genetic risk factors, beyond BRCA1 or BRCA2, are continually being identified and studied.
Q: How would the recommendations for prevention be different for a woman who has breast cancer in her family?
A: The specific recommendations would vary with the risk level. For those with a lifetime risk for breast cancer greater than or equal to 20 percent, annual breast MRI is an important part of breast cancer screening. Some patients are candidates for risk reducing medicines or procedures including: Tamoxifen, preventive removal of the ovaries and/or preventive mastectomy.
HOW TO GO
What: Support Group for men and women who have tested positive for a BRCA1 or BRCA2 gene mutation and their family members and supportive friends.
When: Quarterly. The next meeting will be held from 6-8 p.m. on Wednesday, July 10. Future meetings will be held in other locations.
Where: Good Samaritan North Health Center, 9000 N. Main St., Clayton
For Info: Contact Faith Callif-Daley, (937) 641-3800.
* * *
Genetic Counseling Services in the Miami Valley:
- Faith Callif-Daley and Heather Workman at Dayton Children’s ( 937) 641-3800 (serving Dayton, Middletown, Beavercreek, Springfield)
- * Sarah Jones, Upper Valley Medical Center, (937) 440-4820 (Troy)
- Julie Sawyer, Miami Valley South, (937) 438-3830 (Centerville)
OTHER RESOURCES FOR BRCA POSITIVE INDIVIDUALS:
- FORCE: Facing Our Risk of Cancer Empowered, 16057 Tampa Palms Boulevard West, PMB #373, Tampa FL 33647. Phone: (866) 288-7475 (toll-free). Email: firstname.lastname@example.org. www.facingourrisk.org
- Bright Pink, 400 N. State Street, Suite 230, Chicago IL, 60654. Email: BrightPink@bebrightpink.org. http://brightpink.org/
- Right Action for Women: Christina Applegate Foundation. http://www.rightactionforwomen.org/ (financial support for breast MRI)
- Genetic Testing: Myriad Genetics provides free testing for those who meet specific medical necessity and financial criteria
BOOKS FOR BRCA POSITIVE OR AT RISK INDIVIDUALS
- “Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny Sue Friedman,” by Rebecca Sutphen, M.D., and Kathy Steligo
- “Positive Results: Making the Best Decisions When You’re At High Risk For Breast or Ovarian Cancer” by Joi L Morris
- “Previvors: Facing the Breast Cancer Gene and Making Life Changing Decisions” by Dina Roth Port
- “Pretty is What Changes” by Jessica Queller
Source: Faith Callif-Daley
Following Angelina Jolie’s announcement about her decision to have a preventative double mastectomy, we found local women who have faced this same decision and invited them to share their stories with our readers. We also found local experts to answer key questions about this important health topic and compiled local resources for women facing this decision so they know where to go for help or research.