Pre-vivors & Survivors
Breast cancer survivors
Overview
About 10% of breast cancer is due to a hereditary change such as a BRCA mutation. Sometimes, either because of a family history of cancer or because of particular traits of the cancer itself, a diagnosis of breast cancer may suggest that the cancer is hereditary. In these circumstances an appointment with an expert, such as a geneticist or a genetic counselor, is recommended. Hereditary breast cancer and sporadic breast cancer are similar in some ways, but there are also significant differences. Learning that breast cancer is hereditary may change treatment or follow-up recommendations for breast cancer. Also, if a cancer survivor is the first person to have a genetic test in a family, his/her test result may help identify the cause of hereditary cancer in this family. This information can help other family members make decisions about genetic counseling and testing.
Breast cancer survivors with a BRCA mutation or hereditary breast cancer have a higher likelihood of developing a second breast cancer than women with sporadic breast cancer. This occurrence of a second breast cancer is considered a new "primary cancer.” This is different from a "recurrence" of the original breast cancer. Breast cancer survivors with a BRCA mutation also have a higher risk for ovarian cancer. Options for risk management in cancer survivors are similar to option for cancer pre-vivors who have never been diagnosed.
The FORCE website has sections devoted to cancer risk and risk management that apply to breast cancer survivors. You'll find other important information in the following sections:
- assessing risk and genetic counseling
- family history
- genetic testing
- introduction to risk management
- risk for a second breast cancer
- ovarian cancer risk after breast cancer
- chemoprevention and breast cancer
- chemoprevention and ovarian cancer
- close surveillance for breast cancer
- close surveillance for ovarian cancer
- mastectomy
- breast reconstruction
- oophorectomy
- surgical menopause
- finding specialists
- clinical trials and research
- financial help
- insurance and privacy issues
Risk for second primary breast cancer
Women with a BRCA mutation or other hereditary breast cancer who choose breast conservation to treat their breast cancer are at higher risk for another cancer in either breast than women with sporadic breast cancer. Although the exact risk depends on a woman’s age and other factors, one study found that BRCA carriers diagnosed with breast cancer have a 14% chance within ten years of developing the disease in the same breast, and a 37% chance within ten years of developing the disease in the opposite breast. Another study found a 40% chance for BRCA carriers to develop cancer in the opposite breast within ten years of their initial diagnosis. The risk for a second breast cancer among women who develop sporadic cancer is about 10%.
Breast cancer risk management
Breast cancer survivors with a hereditary form of breast cancer have options for managing their risks for a second primary breast cancer. The most appropriate options depend on many considerations. In general there are three categories of risk management options which are discussed in more detail in their respective sections.
- chemoprevention for breast cancer
- surveillance for breast cancer
- Prophylactic (risk-reducing) surgery
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.
Risk and management for ovarian cancer after breast cancer
Breast cancer survivors who have a BRCA mutation or hereditary breast cancer are at higher risk for ovarian cancer than breast cancer survivors with sporadic breast cancer. A research study on ovarian cancer risk in breast cancer survivors with a BRCA mutation found a 12.7% risk in BRCA 1 carriers and 6.8% risk in BRCA 2 carriers within 10 years of the breast cancer diagnosis. The same study also concluded that BRCA mutation carriers with early-stage breast cancer benefit from prophylactic oophorectomy.
Women who undergo oophorectomy prior to natural menopause will experience menopause as a result of the surgery. Menopausal symptoms vary from woman to woman and some of the consequences of menopause are more serious than others. For more information on surgical menopause, please visit our section on this topic.
Not all breast cancer survivors who carry a BRCA mutation choose prophylactic surgery. Women who are still in treatment for breast cancer, those who are concerned about early menopause, and women who are considering having children after breast cancer have options other than oophorectomy. The options include:
Women with a family history of breast and ovarian cancer but no identified BRCA mutation have an elevated risk of ovarian cancer after breast cancer, but the exact risk is unknown. For those women with breast cancer who have a family history of breast cancer only, (no ovarian cancer in the family) but no known mutation, the risk for ovarian cancer may not be elevated above the risk for the general population. One study on women from families with an extensive history of breast cancer but without a BRCA mutation found the risk for ovarian cancer was no higher than for women in the general population.
Risk management decisions are highly personal. If you are at high risk for ovarian cancer, you need a clear sense of your own personal risk and an understanding of the potential benefits, risks, and side effects of each risk management option. Genetic experts can help breast cancer survivors who have a BRCA mutation, a family history of cancer, or other indicators of hereditary cancer determine their risk for ovarian cancer and develop a risk management plan. Continue to keep in touch with a genetics expert for updates on current knowledge.
Hereditary breast cancer treatment
Hereditary breast cancer may differ from sporadic breast cancer in ways that could effect treatment options. Therefore genetic counseling and testing are often recommended soon after diagnosis if it is believed that the results may effect treatment decisions. In the United States, BRCA results are usually available in three to five weeks. Under certain circumstances—particularly for individuals newly diagnosed with cancer, for whom test results may affect treatment choices—the test can be run more quickly for an additional cost.
Some possible treatment decisions that may be influenced by genetic test results include:
- lumpectomy and radiation vs. mastectomy
- Research has shown that, under certain circumstances, lumpectomy followed by radiation is as effective as mastectomy for treating breast cancer. In women with BRCA mutations or hereditary breast cancer, however, there is an elevated risk for a second primary cancer in the same or the opposite breast. Because of this risk for a second cancer, some women who are diagnosed with hereditary breast cancer choose bilateral mastectomy (surgical removal of both breasts) rather than undergoing lumpectomy and radiation. Studies have shown similar survival rates for women with BRCA mutations who undergo lumpectomy and radiation and women who undergo mastectomy. However, mutation carriers who undergo mastectomy are less likely to develop a second breast cancer.
- oophorectomy vs. medication to induce menopause
- BRCA carriers are at increased risk for ovarian cancer. In women with estrogen receptor-positive breast cancer, treatment often involves injections to shut down the ovaries' production of estrogen. For BRCA carriers who are at increased risk for ovarian cancer, another option may be oophorectomy, which removes the ovaries to lower the risk for ovarian cancer. Further, oophorectomy has also been shown to lower the risk for primary breast cancers in BRCA carriers who do not have bilateral mastectomies. One very small observational study showed a lower recurrence rate in BRCA 1 mutation carriers who had oophorectomy within 6 months of their breast cancer diagnosis compared with those who retained their ovaries. Another study showed that a quarter of early stage breast cancer survivors with a BRCA mutation later develop ovarian cancer if they do not remove their ovaries.
- Tamoxifen, aromatase inhibitors or other hormonal therapies
- Tamoxifen is a treatment used for estrogen receptor-positive breast cancer. Studies of BRCA carriers who were diagnosed with cancer in one breast and took tamoxifen demonstrated a reduced risk for breast cancer in the other breast. One such study showed tamoxifen lowered the risk for a new breast cancer in the other breast by about 40% in women with BRCA 1 mutations and by about 25% in women with BRCA 2 mutations. Tamoxifen may also protect bone density and reduce osteoporosis risk in postmenopausal women who cannot take hormone replacement. Not all experts agree that tamoxifen is appropriate for preventing a second breast cancer in women with BRCA1 mutations. For more information, see our section on tamoxifen.
- Aromatase inhibitors are medications that are prescribed for some post-menopausal women to reduce estrogen production by their fat cells and adrenal cells. These drugs are used for preventing breast cancer recurrence in women with cancers that are estrogen or hormone-receptor positive. One study found that an aromatase inhibitor known as anastrozole reduced breast cancer survivors' risk developing a new cancer in the other breast by 58 percent. This study did not look specifically at women with BRCA mutations, so the benefits of these medications to prevent breast cancer in BRCA carriers is not certain. For more information, see our section on aromatase inhibitors
As new research continues, treatments specifically targeting hereditary cancers may become available. Some studies have suggested that BRCA-associated cancers may respond more favorably to certain chemotherapies. A study looking at breast cancer cells grown in tissue cultures demonstrated that a functioning BRCA 1 gene is necessary for response to Taxol chemotherapy and suggests that women with BRCA 1 mutations and breast cancer may not respond as well to these agents as women with sporadic cancer. However, this research is preliminary and has not been tested in clinical trials with breast cancer patients.
A new class of medications called "PARP Inhibitors" may specifically kill hereditary cancer cells caused by a BRCA mutation and spare healthy cells. A preliminary study on breast cancer cells in mice has been encouraging, killing cells that model the BRCA breast cancer cells and eliminating tumors. Research using PARP inhibitors for BRCA-associated cancer in women with metastatic breast cancer has begun in the United Kingdom. Phase II clinical trials are available for women with metastatic (stage IV) breast cancer who are BRCA positive and who have already undergone standard chemotherapy for their disease. See our clinical trials page for information on PARP inhibitor studies.
Hereditary breast cancer support
Confronting breast cancer diagnosis or treatment can be confusing and frightening. If you are a breast cancer survivor, sometimes it helps to speak with other women who have faced similar circumstances. Learn more about talking with other breast cancer survivors in our Pre-vivors & Survivors support section.
Breast cancer research and clinical trials
FORCE has a section of our site devoted to research and clinical trials. To search the National Institute of Health's database on cancer clinical trials to see if there are available clinical trials in your area, click on the links below.
- breast cancer treatment clinical trials
- breast cancer chemoprevention clinical trials
- ovarian cancer chemoprevention clinical trials
- breast cancer detection clinical trials
- ovarian cancer detection clinical trials
- oophorectomy clinical trials
Other websites
www.BrainMetsBC.org and www.AdvancedBC.org
These sites were developed by breast cancer survivor and author Musa Mayer. Both are resources for people living with advanced breast cancer.
Breastcancer.org
Breastcancer.org is a nonprofit organization which provides information on the latest breast cancer
information and research. The site has an excellent section on breast cancer genetics.
Fertile Hope
Fertile hope is a nonprofit organization providing information and support
for cancer patients whose medical treatments may affect their fertility.
The website provides a wide range of information as well as links to organizations,
selected health care providers, and other resources.
Laurie Stein's Personal Story
Reporter and FORCE member Laurie Stein tells her personal experience with breast cancer, genetic testing, and dealing with the aftermath of learning she carries a mutation.
National Cancer Institute
The National Cancer Institute is a government agency that provides statistics, education and research on all cancer types. The site has a specific section on cancer genetics, with sections devoted entirely to hereditary breast cancer.
Sharsheret
Sharsheret is a nonprofit organization linking young Jewish women in their
fight against breast cancer.
Susan G. Komen Breast Cancer Foundation
The Komen Foundation has comprehensive information on all aspects of breast cancer.
SusanLoveMD.com
A variety of useful information including a discussion
of various risk factors for breast cancer; a discussion of the problems that
may lead to a decision to have a breast biopsy; a description of various types of
biopsies; and a checklist
for choosing a doctor.
Young Survival Coalition
YSC is a breast cancer organization focusing on the concerns of women diagnosed
with breast cancer at age 40 and under.
Further reading - books
Chemosabee, by Nancy Reinisch
At one particularly low point in her breast cancer treatment, Nancy Reinisch playfully put on boxing gloves and her husband dubbed her “Chemosabee . . . fly weight champion of the world!” Courage and humor in the face of adversity became themes in her 12-round, 12-month fight for the coveted title “Cancer Survivor.”
Further reading - articles (advanced reading)
Risk of Ovarian Cancer in BRCA1 and BRCA2 Mutation-Negative Hereditary Breast Cancer Families
Noah D. Kauff, Nandita Mitra, Mark E. Robson, Karen E. Hurley, Shaokun Chuai, Deborah Goldfrank, Eve Wadsworth, Johanna Lee, Tessa Cigler, Patrick I. Borgen, Larry Norton, Richard R. Barakat, Kenneth Offit. Journal of the National Cancer Institute. Volume 97, issue 18: p. 1382-1384, September 2005.
Targeting the DNA repair defect in BRCA mutant cells as a therapeutic strategy
Hannah Farmer, McCabe N, Lord CJ, Tutt AN, Johnson DA, Richardson TB, Santarosa M, Dillon KJ, Hickson I, Knights C, Martin NM, Jackson SP, Smith GC and Ashworth A. Nature. Vol. 434, p. 917-921, April 2005.
The
risk of ovarian cancer after breast cancer in BRCA1 and BRCA2 carriers
Kelly Metcalfe, Lynch HT, Ghadirian P, Tung N, Olivotto IA, Foulkes WD, Warner
E, Olopade O, Eisen A, Weber B, McLennan J, Sun P, Narod SA.
Gynecologic Oncology. Volume 96,
Issue 1: p. 222-226,
January 2005.
A
combined analysis of outcome following breast cancer: differences in survival
based on BRCA1/BRCA2 mutation status and administration of adjuvant treatment
Mark E. Robson, Pierre O. Chappuis, Jaya Satagopan, Nora Wong, Jeff
Boyd, John R. Goffin, Clifford Hudis, David Roberge, Larry Norton, Louis R.
Bégin,
Kenneth Offit, and William D. Foulkes. Breast Cancer Research. Volume 6, Number 1: R8-R17, October 2003.
BRCA1
functions as a differential modulator of chemotherapy-induced apoptosis
Jennifer E. Quinn, Richard D. Kennedy, Paul B. Mullan, Paula M. Gilmore, Michael
Carty, Patrick G. Johnston and D. Paul Harkin.
Cancer Research. Volume 63: p. 6221-6228, October 2003.
Impact
of germline BRCA 1 mutations and overexpression of P53 on prognosis and response
to treatment following breast carcinoma: 10-year follow-up data
John R. Goffin, M.D., Pierre O. Chappuis, M.D., Louis R. Bégin, M.D.,
Nora Wong, M.Sc., Jean-Sébastien Brunet, M.Sc., Nancy Hamel, M.Sc.,
Ann-Josée Paradis, B.Sc., Jeff Boyd, Ph.D., William D. Foulkes, M.B.,
Ph.D..
Cancer. Volume 97, Issue 3: p. 527-536, January 2003.
Survival
in prospectively ascertained familial breast cancer: Analysis of a series
stratified by tumour characteristics, BRCA mutations and oophorectomy
Pål Møller, Åke Borg, D. Gareth Evans, Neva Haites, Marta
M. Reis, Hans Vasen, Elaine Anderson, C. Michael Steel, Jaran Apold, David
Goudie, Anthony Howell, Fiona Lalloo, Lovise Mæhle, Helen Gregory, Ketil
Heimdal.
International Journal of Cancer. Volume 101, Issue 6: p. 555-559,
August 2002.
Outcome of conservatively
managed early-onset breast cancer by Brca1/2 status
Bruce Haffty, Harrold E, Khan AJ, Pathare P, Smith TE, Turner BC, Glazer PM, Ward
B, Carter D, Matloff E, Bale AE, Alvarez-Franco M.
Lancet. Volume 359, issue9316: p. 1471-7, April 2002.
Effect of BRCA
mutations on the length of survival in epithelial ovarian tumors
Y. Ben David, A. Chetrit, G. Hirsh-Yechezkel, E. Friedman, B.D. Beck, U. Beller,
G. Ben-Baruch, A. Fishman, H. Levavi, F. Lubin, J. Menczer, B. Piura, J.P.
Struewing, B. Modan.
Journal of Clinical Oncology. Volume 20, Issue 2: p. 463-466, January
2002.
Effect of radiotherapy
after breast-conserving treatment in women with breast cancer and germline
BRCA1/2 mutations
Lori J. Pierce, Myla Strawderman, Steven A. Narod, Ivo Oliviotto, Andrea Eisen,
Laura Dawson, David Gaffney, Lawrence J. Solin, Asa Nixon, Judy Garber, Christine
Berg, Claudine Isaacs, Ruth Heimann, Olufunmilayo I. Olopade, Bruce Haffty,
Barbara L. Weber.
Journal of Clinical Oncology. Volume 18, Issue 19: p. 3360-3369,
October 2000.