By Beth Anglin, M.D.
Everyone, men included, has a risk of breast cancer. For most people the risk is very low. For others this risk can be in the range of a 60 to 80 percent chance of getting breast cancer. How do you know where you fall? The chart below gives family risk factors to be considered high-risk.
Who should test for the BRCA gene?
Ashkenazi Jews with a personal or family history of the following:
- Breast cancer under 50
- Bilateral breast cancer
- Ovarian cancer at any age
- Breast and ovarian cancer in one person
- Male breast cancer
- Multiple breast, ovarian, pancreatic or prostate cancers
What is a BRCA gene mutation?
Genes are the blueprint for everything in the body. Some cancers are caused by an abnormality in one of the genes in the body. The BRCA gene mutation can give up to an 80 percent risk of getting breast cancer and up to a 45 percent risk of ovarian cancer. This gene can be found with a blood or saliva test. That sounds easy, but one must be ready to make difficult decisions regarding the results. In the general population, only one out of 400–500 people carry this mutation. In the Ashkenazi population, one out of 40 people carry this mutation. The abnormal gene may be present in both men and women and can be passed from the mother or father to their children.
What if a BRCA mutation is found?
There are several options if you have a BRCA mutation. The first is surveillance, which is very close monitoring. The recommendations include mammograms beginning at age 25–30 for women. This is followed in six months with a breast MRI. This pattern is continued so that one radiology exam is performed with a breast exam every six months. For the ovarian cancer risk, an ovarian sonogram and blood test for CA-125 is performed every six months.
The second option is prevention with medications. Tamoxifen can reduce the risk of breast cancer in women by half. This means the 80 percent risk is decreased to 40 percent. Mammograms and MRI surveillance should still be performed.
The third option is preventative surgery, which includes removal of the breasts or ovaries. This sounds extreme but is a choice that many women make. If you watched you mother or aunt fight breast cancer, you might choose prophylactic mastectomy with reconstruction. Both the tubes and ovaries need to be removed for this to be a true cancer-preventing surgery. The pathologist must also process the tissue more carefully than usual.
Removal of the breast tissue leaving the skin for reconstruction is called a skin-sparing or total skin-sparing mastectomy. The main choice is deciding whether to save the nipples or not. This is a topic of much research, as nipple-sparing surgery has been performed for only a few years. Some surgeons refuse to save the nipples due to a possible risk of future breast cancer. There are many options for reconstruction that include implants or one’s own tissue. It is very important to have a surgeon or gynecologist who is aware of the complexities of a BRCA diagnosis.
Frequently asked questions
1. Will insurance pay for testing? Yes, almost all insurance companies, including Medicare and Medicaid, pay for BRCA testing in appropriate families based on the deductible.
2. Can I lose or be denied insurance if I have the BRCA gene? No, a federal act called GINA or Genetic Information Non-discrimination Act protects one from losing insurance or having premiums increased if a genetic mutation is found. It cannot be used as a pre-existing condition to deny coverage.
3. How much does it cost? There is a specialized panel for Ashkenazi men and women that checks the three most common mutations. This is less expensive, at $575, than the entire panel, which costs $3,500. Again, insurance pays for this based on how much of one’s deductible has been met.
4. How or where can I get testing? Most physicians can do this test in their office with a blood draw or a saliva sample. Certified genetic counselors also perform testing. Ask your health care provider for a referral to a physician who specializes in the BRCA gene and the relationship to surgery, prevention or surveillance. Almost anyone can draw the blood.
5. I don’t have a history of early breast ovarian cancer but my husband’s family does. Should my daughter test? Yes, the gene can be passed from the father to the daughter. Half of those with a BRCA mutation inherited the gene from their father.
6. What should I do about my son? Awareness is the key. Men often don’t test because it is seen as a woman’s issue. Surveillance options in men have not been fully determined. The risk of breast cancer is 6 percent. Earlier prostate cancer is a possibility in males with the BRCA mutation. If a breast lump or urinary changes are noted, see your primary care physician and tell them you have an increased risk of these cancers. Your son could pass the gene to your granddaughter.
7. Where can I get more information? FORCE (www.facingourrisk.org) is a Web-based support group for those with a hereditary risk of breast and ovarian cancer. It was founded by Sue Friedman, a veterinarian who survived breast cancer twice by the age of 40. There are information, research opportunities and a message board. Ask your doctor for more information or for a referral to a doctor who is a specialist in the BRCA gene. Certified genetic counselors are also available in the area.
Why is this important to me? My first patient with a BRCA mutation was 26 years old with breast cancer. I have patients that came to me with their second diagnosis of breast cancer before the age of 40. This second cancer could have been prevented if the family history was explained and BRCA testing chosen. I have seen women survive breast cancer, only to die of ovarian cancer. Every person should have access to a BRCA-educated medical professional to help them with this journey and prevent hereditary cancer if possible.
Jewish Family Service offers free breast cancer support programs to community
By Rachel Gross
Jewish Family Service (JFS) breast cancer support groups offer advice, perspective, friendship and hope. With its free services, women and their families have a place to turn and connect with others like themselves.
JFS provides a wide range of support services for women who have been diagnosed with breast cancer at any time in their lives, as well as their family members — husbands, parents, children, anyone who may need help. Individual counseling for women, support groups for women, counseling for couples coping with breast cancer and counseling for children whose mothers have breast cancer are all available free of charge.
This is made possible by the Margot Rosenberg Pulitzer Foundation, created by Ann Rosenberg, whose daughter, Margot, died from breast cancer several years ago. She had a desire to establish an organized free support program so money wouldn’t be a barrier.
Beth Broodo, breast cancer program coordinator, spearheaded this program when it began about four years ago. Her job is to work with women and their families to discuss the challenges they face with breast cancer.
“The women feel accepted and welcomed into the groups right away,” she said. “When a person faces their mortality with a life-threatening illness, it changes everything and shakes up someone’s entire reality. To be able to take off the masks they have in society, be genuine and talk about their feelings is wonderful. They are able to identify with each other.”
Broodo added that having Jewish women unite and share their feelings is special. She believes is it a form of healing.
She leads the counseling groups, which occur the third Monday of every month at 7 p.m. at JFS, and the second Monday of every month at 11:30 a.m. at Temple Emanu-El. People are welcome to come and go as they please for as long as they want. There have been requests from other synagogues to set up groups as well.
Michael Fleisher, JFS executive director, said he is proud that JFS can offer these services to help more families.
“While we had a more generic response of being supportive, we acknowledge that we didn’t have a targeted, specialized resource that reached out and actively sought to bring these women together in groups,” he said. “This is a wonderful example of how a family can make a difference. They know breast cancer affects other people and want to provide resources to address it.”
Other groups are created as needed. In the past, JFS has held groups for men with breast cancer, and husbands who needed an outlet to share their feelings. They also have counselors that specialize in children and play therapy and can address the needs of children who have parents with breast cancer.
Fleisher added that the goal is to reach out to the Jewish community, but like all other JFS programs, it is open to the entire community. He said JFS has a deep understanding of what it’s like to impact people’s lives.
“It’s always uplifting for any of us, whether it’s the professional staff or board members, to know that all of our efforts make a difference for an individual and their family,” he said. “Doing this is fulfilling on a professional level, and a personal one as well. Everyone knows someone who has or had breast cancer.”
Many of the women in the groups are survivors who battled breast cancer many years ago. Broodo said these women serve as an example of how people can overcome it and live a happy life.
As a breast cancer survivor herself, Broodo is able to better relate to the women, knowing firsthand what they go through. She said she gets positive feedback from the women, many of whom are grateful that this is a free service, and she added that she gets fulfillment from helping others.
“We have people who are going through treatment and those who have just finished,” she said. “This is about the supportiveness, lovingness and acceptance of others in the group. It’s an uplifting, positive experience. We are here to meet their needs in any way possible. I love my job and it’s incredible and inspiring to be with these women.”
For more information, contact Broodo at 972-437-9950 or e-mail firstname.lastname@example.org.