I Have a BRCA Mutation


ON THIS PAGE:

What are my chances of getting breast or ovarian cancer?

Does having a BRCA mutation increase my chances of getting other types of cancer?

How do I talk about it?

What are my options? (What should I do?)

I’ve had the surgeries – am I now cancer-free?

I’ve had a mastectomy and reconstructive surgery, are there any dangers with getting implants?

Do Oral Contraceptives (Birth Control) Reduce my risk of getting Breast or Ovarian Cancer?

Does having a baby reduce the risk of getting Breast and Ovarian Cancer?

If I get cancer and have a BRCA mutation - will I die?

Will I pass this mutation on to my child?

How can I AVOID passing a BRCA mutation onto my children? (What is Pre-implantation Genetic Diagnosis?)

Finding a Support Group


What are my chances of getting breast or ovarian cancer?

According to estimates, about 36% – 85% of women with a BRCA gene mutation will develop breast cancer. People with non-mutated BRCA genes are about 13% likely to develop breast cancer. In other words, women with an altered BRCA1 or BRCA2 gene are 3 to 7 times more likely to develop breast cancer than women without a BRCA mutation.

Having a BRCA mutation increases your lifetime risk of developing ovarian cancer from an estimated 2% (general population) to between 16% - 60%. Note that these figures are estimated ranges that may change with more research.

Men with a BRCA gene mutation have an increased risk of developing breast cancer, prostate cancer and skin cancer (melanoma). Furthermore, these cancers are more likely to develop at a younger age in men with a BRCA mutation.

Additionally, in some people, BRCA gene mutations have been associated with an increased risk of additional cancers (see below).

For more information on lifetime risk of developing cancer with a BRCA mutation, please visit

National Cancer Institute Fact Sheet on BRCA

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Does having a BRCA mutation increase my chances of getting other types of cancer?

Women with a BRCA mutation may have a somewhat increased chance of developing colon cancer.

Men with an altered BRCA gene have an increased risk of breast cancer (primarily if the alteration is in BRCA2), and possibly prostate cancer.

Alterations in the BRCA2 gene have also been associated with an increased risk of lymphoma, melanoma, and cancers of the pancreas, gallbladder, bile duct, and stomach in some men and women.

While these are not strong associations, it is important to chart all this information when taking a family health history as it can factor into your risk for having a BRCA mutation.

For more information, please visit:

National Cancer Institute Fact Sheet on BRCA

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How do I talk about it?

Deciding how to talk about having a BRCA mutation is an individual and personal decision. You may want to talk to a genetic counselor or genetic specialist, who can help you decide how to talk to your family and friends about what is going on and your options. You may also be able to have a family genetic counseling session, with a genetic counselor present to guide a discussion.

Some people may take a while to talk about their genetic mutations and this is normal. If you are feeling shy about talking, you may want to break the ice by trying an on-line forum or support group, where you can choose an anonymous name, such as found at FORCE.

You may want to talk to a survivor or previvor over the phone, and can find opportunities to do so through FORCE, Imerman Angels or the Livestrong Foundation

Finding a support group of women or family members in your neighborhood who meet regularly to talk about what is going on in their lives may help also. Try Susan G. Komen affiliate network, FORCE or Bright Pink. You should also ask your local genetic counselor, genetic specialist, nurse, or physician to find support groups in your area.

Finally, watching In the Family with your friends and family is a great way to introduce them to the complex issues and emotions associated with finding out you’ve inherited a BRCA mutation.

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What are my options?

There are many options available for managing cancer risk in individuals with BRCA mutations. It is important to note that there are limited data on the effectiveness of these options. In general there are 3 categories of risk management options: surveillance, chemoprevention, prophylactic (risk-reducing) surgery and many alternative methods.

Surveillance: Surveillance means carefully monitoring for symptoms of cancer under the supervision of your primary care provider, in an effort to catch the disease in its earlier stage. With careful surveillance, many cancers will be diagnosed early and can be successfully treated.

Surveillance methods for breast cancer include a combination of mammography, clinical breast exam, self-exams, and breast MRI's. Surveillance methods for ovarian cancer include transvaginal ultrasound, CA-125 blood testing, and clinical exams. It is important to note that ovarian cancer is one of the most deadly cancers and it is uncertain whether surveillance can reduce a person's chance of dying from ovarian cancer.

Prophylactic Surgery: Prophylactic surgery means removing as much of the at-risk tissue (for example, breasts, fallopian tubes, ovaries) as possible in order to reduce the chance of developing cancer in these areas. Preventive surgeries, such as mastectomy (removal of healthy breasts) and oophorectomy (removal of healthy fallopian tubes and ovaries) do NOT offer a guarantee against developing these cancers, but have been reported to be effective in greatly reducing the risk. Because not all at-risk tissue can be removed by these procedures, some women have developed cancer even after prophylactic surgery. There are many options today for mastectomies and reconstructive surgeries.

Chemoprevention: Chemoprevention involves the use of natural or synthetic substances, such as medication, to reduce the risk of developing cancer, or to reduce the chance that cancer will come back. For example, the drug tamoxifen has shown in some studies to reduce the risk of breast cancer.

Risk Avoidance: Risk avoidance means changing your behaviors, daily routine, and actions to those that may help decrease you chances of developing breast cancer. These behaviors include exercising regularly, not smoking, eating a balanced diet including increased antioxidants (from foods such as fruits, vegetables and green tea), and limiting alcohol consumption. The effects of risk avoidance in people with BRCA mutations are not known.

Men who know they carry a BRCA gene mutation can take proactive steps such as getting screened regularly for some of the cancers associated with the mutation, such as annual prostate cancer screening with a PSA test and annual skin examinations for melanoma. Men with a BRCA mutation should also seek medical advice about any changes in their breasts.

Your decision of what to do will depend on your unique circumstances, financial situation, family history, and personal choices. It is important to consult your primary care provider, genetic counselor/specialist and family and loved ones when deciding what to do. It is important to remember that none of the risk-management options will eliminate all cancer risk. Some risk always remains, even with the surgical options.

For more information on your options to reduce cancer risk, visit:

Understanding Cancer Risk Fact Sheet
by the National Cancer Institute

Risk Management, a comprehensive guide to help reduce risk in women with BRCA mutations
by FORCE

Prevention and Treatment
by the American Cancer Society

NCI’s statement on breast cancer risks and prevention

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I’ve had the surgeries – am I now cancer-free?

It is very important to have a cancer risk assessment and counseling about all options for possible prevention before making decisions on getting a prophylactic mastectomy and/or prophylactic oopharectomy. There are no guarantees for not getting cancer!

Some women who have a high risk of breast and ovarian cancer may choose to have a prophylactic mastectomy (the removal of both breasts when there are no signs of cancer) or a prophylactic oophorectomy (the removal of both ovaries when there are no signs of cancer). The risk of breast cancer is lowered in both cases. With a mastectomy, there are fewer cells available to become cancerous. The removal of ovaries decreases the amount of estrogen made by the body and thus lowers the risk of breast cancer (see question 11 re:estrogen as a risk factor). However, a sudden drop in estrogen levels may cause the onset of symptoms of menopause, including hot flashes, trouble sleeping, anxiety, and depression. Long-term effects include decreased sex drive, vaginal dryness, and decreased bone density. In some women, prophylactic mastectomy may cause anxiety, depression, and concerns about body image. Symptoms vary greatly among women.

For more information on Cancer Risk Assessment, please visit:

Understanding Cancer Risk Fact Sheet
by the National Cancer Institute

NCI’s statement on breast cancer risks and prevention

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I’ve had a mastectomy and reconstructive surgery, are there any dangers with getting implants?

While mastectomy and re-constructive surgery offer many health benefits including the reduced chance of cancer, there are risks that are associated with these procedures.

The risks related specifically to the removal of the breast include a compromised blood supply to the skin of the chest wall, which may cause some loss of skin in this area. In rare, extreme circumstances, this may require a skin graft. There is also a risk of bleeding into the space where the breast used to be. Sometimes a second operation is required to control bleeding, but this is uncommon. You may also experience pain and sensitivity in the breast area after augmentation.

There are also risks related to reconstructive surgery. With implants, there is an increased risk of infection (most of which can be controlled with an antibiotic) and a risk that the scar around the implant will contract. This can make the breast feel hard, and can be treated by removing the scar tissue or removing /replacing the implant. (Both options involve additional surgery.) Surgical scars may fade with time, but they will never disappear entirely.

There are two different types of breast implants that are offered: Silicone and Saline. Silicone breast implants are said to feel more “real” than saline implants. However, saline breast implants are generally less expensive and the incision is also smaller.

A major risk with Breast implants is that they have the potential to burst or leak. Once this happens, the implant will quickly lose its size and form. If a saline implant does burst, your body will not suffer from dangerous toxins as saline is nothing more than a water with salt added. With silicone breast implants, once a leak occurs, it may cause extreme harm to your body before you even realize a leak is present.

It is important to understand the benefits and risks that are associated with the different types of implants that are available. You should also become familiar with the type of basic benefits and risks associated with the procedure in general.

For more information on risks associated with reconstructive surgery, please visit

Mastectomy Guide
by Right Health.com

Mastectomy Risk Article
by Safe Breast Surgery.com

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Does having a baby reduce the risk of getting Breast and Ovarian Cancer?

For most women, pregnancy seems to provide some protection against breast and ovarian cancer. In the case of ovarian cancer, studies have shown that women who have given birth are 30% - 60% less likely to develop ovarian cancer than are women who have never been pregnant. In fact, it appears that the more times a woman has experienced childbirth, the less likely she is to develop ovarian cancer.

Research also indicates that breast cancer risk is lower in women who have had children, particularly if they gave birth before the age of 30.

It is unclear whether this same relationship between pregnancy and breast cancer risk holds true in women who have BRCA mutations. For the most part, recent studies have found no relationship between age at first pregnancy and breast cancer risk in these women. There is also no consensus as to whether the number of pregnancies changes the risk of breast cancer in women who have BRCA mutations. Although one study found that fewer pregnancies and later age at first childbirth were actually protective against breast cancer in mutation carriers, recent studies have not confirmed this relationship.

Other studies show a modest reduction in risk of breast cancer was observed among BRCA1 carriers with 4 or more births. Among BRCA2 carriers, increasing parity was associated with a significant increase in the risk of breast cancer before age 50 and this increase was greatest in the 2-year period following a pregnancy. Unfortunately, there is no consensus to whether having a baby reduces the risk of getting Breast or Ovarian Cancer with a BRCA mutation.

For more information on pregnancy and HBOC, visit

Breast and Ovarian Cancer Nongenetic Risk Factors
by Genetic Health

Effect of Pregnancy as a risk factor for breast cancer in BRCA1/BRCA2 mutations ABSTRACT
by International Journal of Cancer

Childbirths and Breast Cancer Risk
by Medscape
NOTE, you may have to register to view full article

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Do Oral Contraceptives (Birth Control pills) reduce my risk of getting Breast or Ovarian Cancer?

Taking oral contraceptives ("the pill") may slightly increase the risk of breast cancer in current users. However, once discontinued this risk decreases over time. The most commonly used oral contraceptive contains estrogen. Estrogen is a risk factor in breast cancer.

Endogenous estrogen is a normal hormone made by the body. It helps the body develop and maintain female sex characteristics. Being exposed to estrogen over a long time may increase the risk of breast cancer. Estrogen levels are highest during the years a woman is menstruating. A woman's exposure to estrogen is increased in the following ways:

  • Early menstruation: Beginning to have menstrual periods at age 11 or younger increases the number of years the breast tissue is exposed to estrogen.
  • Late menopause: The more years a woman menstruates, the longer her breast tissue is exposed to estrogen.
  • Late pregnancy or never being pregnant: Because estrogen levels are lower during pregnancy, breast tissue is exposed to more estrogen in women who become pregnant for the first time after age 35 or who never become pregnant.

Progestin-only contraceptives that are injected or implanted do not appear to increase the risk of breast cancer.

Results from a National Cancer Institute study show that women who had ever taken Oral Contraceptives were 27% less likely to develop ovarian cancer. The study concluded the longer Oral Contraceptive’s were used, the greater the ovarian cancer risk reduction, decreasing about 20% for each 5 years of use. Furthermore, for each five years of use, risk of developing ovarian cancer was reduced 29% in the first 10 years after discontinued use of taking Oral Contraceptives.

For more information on Ovarian Cancer and Oral Contraceptives, and to read the report of the aforementioned study, please visit:

Oral Contraceptives Reduce Long-Term Risk of Ovarian Cancer
a Report by the National Cancer Institute

For more information on Breast Cancer Prevention, please visit:

Resource Guide on Breast Cancer Prevention
by the National Cancer Institute

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If I get cancer and have a BRCA mutation - will I die?

No one can tell you whether or not you will die due to cancer. Having a BRCA mutation does NOT alter your chances of surviving cancer in any way. A BRCA mutation ONLY indicates a higher RISK of developing cancer, and tells nothing about surviving cancer. If you do develop cancer, it is imperative that you consult a physician and cancer specialist immediately.

Watch an introductory video on Understanding Cancer Treatment
provided by the American Cancer Society

For more information on Breast Cancer Treatment, visit:

Breast Cancer Treatment Options
by the National Cancer Institute

For more information on Ovarian Cancer Treatment, visit:

What you need to know about Ovarian Cancer, Treatment
by the National Cancer Institute

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Will I pass this mutation on to my child?

If one copy of a particular gene in your cells has a mutation, each time you have a child there is a 1 in 2 chance that your child will inherit the genetic mutation instead of a working copy of the gene. There are advanced genetic testing techniques, used together with in-vitro fertilization to detect BRCA mutations (see below).

For more information on inheriting Hereditary mutations, visit:

Understanding the Difference Between "Congenital" and "Hereditary" Conditions
by Associated Content

Slide show: How genetic disorders are inherited
by Ohio Health

Understanding Cancer Series: Hereditary Mutations
by the National Cancer Institute

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How can I AVOID passing a BRCA mutation onto my children? (What is Pre-implantation Genetic Diagnosis?)

There is an option called PREIMPLANTATION GENETIC DIAGNOSIS (PGD) that offers the opportunity (albeit an expensive option) to have offspring free of the parental BRCA mutation. PGD is diagnosis of a genetic condition prior to pregnancy. This form of genetic testing is performed on eggs or embryos during an in vitro fertilization (IVF) cycle. Therefore, in order to have PGD, you must undergo in-vitro fertilization. With PGD, an in-vitro fertilization clinic harvests eggs from the mother-to-be and sperm from the father-to-be, combines them in a sterile dish for fertilization. On the third day after fertilization, one of the cells is removed, placed in a test tube, and sent via FedEx to a lab in the U.S. for BRCA testing. Within 24 hours, it is known whether the cell is free of the mutation. If so, on day 5, the multiplying embryonic cells are implanted in the mother-to-be with the (98-100) expectation of offspring who will be free of the cancer-causing mutation (instead of only a 50% chance). Speak with your doctor or a genetic counselor to explain the pros and cons of PGD testing.

For more information on PGD, in-vitro fertilization, and pre-natal genetics options, visit:

Reproductive Genetics Institute

Learn more about Preimplantation Genetic Diagnosis (PGD)
by Genesis Genetics

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Finding a Support Group

There are many support groups for women and families affected by BRCA mutations, Hereditary Breast and Ovarian Cancer (HBOC), and other types of cancer. Read our descriptions below to find a support group right for you. Most of these organizations are national with affiliate branches all over the country. You may want to organize a meeting or start a branch in your community. Also be sure to ask genetic counselors in your area for specific support groups in your community. Your local hospital, Breast/Ovarian Cancer center, or physicians office may also have more information on local support groups.

FORCE: Facing Our Risk of Cancer Empowered
FORCE is an 8,000+ member program and national nonprofit organization devoted to providing support to the high-risk community and improving the lives of individuals and families affected by hereditary breast and ovarian cancer. There are outreach and support groups in almost every state, as well as a comprehensive on-line network of discussions boards.

Bright Pink
Bright Pink is a unique organization dedicated to providing support and resources to young women at high risk for hereditary breast and ovarian cancer. With fundraisers and special events in many cities, Bright Pink brings together strong young women committed to being proactive with breast and ovarian health.

Imerman Angels
Imerman Angels is a not-for-profit organization providing one-on-one cancer support: connecting cancer fighters, survivors and caregivers. Imerman Angels partners a person fighting cancer with someone who has beaten the same type of cancer. Based on the theory that one-on-one relationships give a fighter the chance to ask personal questions and get support from someone who is uniquely familiar with their experience. The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world.

Livestrong
The Lance Armstrong Foundation is a national network that is dedicated to helping anyone affected by cancer. They provide information to learn about all different types of cancer, get one-on-one support and hear Survivor’s stories.

Susan G. Komen for the Cure Affiliate Network*
Komen for the Cure is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Events like the Komen Race for the Cure brings together families, friends and strangers alike to feel empowered and unified, while raising money for breast cancer research. Affiliate groups are in 125 cities across the country.

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