FREQUENTLY ASKED QUESTIONS
- Will I get cancer?
- Current risk estimates suggest that 1 out of 3 Americans will develop some type of cancer in their lifetime. This means that 2 out of 3 Americans will not develop cancer.
- How common is sporadic cancer?
- Sporadic cancer is a very common occurrence, with an estimated 90-95% of all the cancers seen due to sporadic causes.
- Am I predisposed to developing breast cancer?
- Only 5-10% of all breast cancer cases are due to inheriting a cancer predisposition from one or both of your parents. This means that 90-95% of all breast cancer cases are due to sporadic causes, not inherited susceptibility.
- Can males get breast cancer?
- Yes. Breast cancer in men is rare, however it does occur. Men who have an altered BRCA2 gene have higher rates of breast cancer than men without an altered gene.
- What can I do to manage/lower my risk?
- Many patients opt for increased surveillance, prophylactic surgery, and/or chemoprevention, along with diet and lifestyle changes to decrease their risk for developing breast and other cancers.
- What are my surgery options?
- Some women who have a BRCA1 and/or BRCA2 mutation elect to have their breast and/or ovaries removed surgically, in an effort to reduce their risk for developing breast and/or ovarian cancer. Recent data suggest that removal of the breast and ovaries may reduce the risk of cancer in these organs by 90%1. However, even with surgical removal of the organs, a risk of cancer remains. Surgery cannot remove all breast cells, and ovarian cells are known to migrate into the abdominal cavity that surrounds them (peritoneum). Cancer can occur in the peritoneum even after the ovaries have been removed.
1. Hartmann, L.C.; Schaid, D.J.; Woods, J.E.; Crotty, T.P.; et al. Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. New England Journal of Medicine. 340(2):7-84, 14 Jan 1999.
- Do I have to have a hysterectomy?
- Typically the uterus is not an organ that is at an increased risk for developing cancer in the presence of a BRCA1 and/or BRCA2 mutation. However, a patient may have some gynecological issues that may require her uterus to be removed. Removal of the uterus is strictly a gynecological issue, and the patient should discuss the risks, benefits, and limitations of this surgery with her gynecologist.
- What are the risks involved with hormone replacement therapy (HRT)?
- Estrogen and progesterone (two of the hormones used in some forms of HRT) may increase a woman's risk for developing breast cancer. Patients should be aware that these hormones affect many tissues in the body and therefore before a patient considers HRT, it is prudent to discuss all the risks, benefits, and limitations of pursuing HRT with a medical doctor.
- Do I have a mutation of "the breast cancer gene?"
- Possibly, but only a small percentage (5-10%) of people who develop cancer do so because they have inherited a mutation in a cancer susceptibility gene, such as BRCA1 and BRCA2. In the general population, 1 out of 400 persons carry a mutation in one of these genes. This proportion is higher (1 out of 40) for people of Ashkenazi Jewish descent.
- What does BRCA1/BRCA2 genetic testing involve?
- The process of undergoing genetic testing is very dynamic, however after obtaining informed consent from the patient, the actual testing procedure itself is quite simple. The patient has a small amount of blood drawn, which is then sent to a laboratory for complex DNA analysis. Once the blood is in the laboratory, scientists look for alterations in genes that may be associated with an increased risk of particular cancers. Genetic testing may reveal whether the cancer risk in a family is due a mutation in a gene such as BRCA1 and/or BRCA2.
- What are the benefits of genetic testing?
- The information gathered from genetic testing may help you make more informed choices about your own cancer prevention and management. Personal decisions about options such as surgery and chemoprevention may be aided by knowledge of your mutation status. The results may also help you to determine if there is increased cancer susceptibility in your family.
- If my genetic test is negative am I still at risk for cancer?
- Yes, you are. Population risk for developing cancer still exists, even in light of a negative genetic test result. Meeting with a genetic counselor or another medical professional skilled in risk assessment will help you determine your individual risk for developing breast and/or ovarian cancer in your lifetime.
- If my genetic test is positive, does this mean I will develop cancer?
- No, even though a gene mutation may be present, you are not at 100% risk for developing cancer. An individual with a BRCA1 and/or BRCA2 alteration is more likely to develop cancer than an individual without an alteration. However, not every individual who has a BRCA1 and/or BRCA2 alteration will develop cancer, because genes are not the only factor affecting cancer risk.
- If I inherited an altered BRCA1 or BRCA2 gene, what are the chances that my child will inherit this altered gene?
- Because the BRCA1 and BRCA2 genes are autosomal dominant genes, meaning they are on the non-sex chromosomes, and only one changed gene is necessary for developing disease, the risk for passing the mutation onto a biological child is 50%.
- What are the costs of genetic testing?
- The price of testing varies from a few hundred to a few thousand dollars. The costs of genetic testing may not be covered by your health insurance. It is important to talk with your genetic testing coordinator to determine what the best financial arrangements are for you.
- Will my privacy be protected?
- Genetic results are regarded as extremely confidential. Only the patient and the presiding genetic testing coordinator (doctor, counselor, and/or other qualified health care professional) will have access to them. Results are not released to anyone outside of this team without the patientís written authorization, or unless subpoenaed by a court of law.
- Can my genetic information be used in a discriminatory manner by my health, life, and disability insurance carrier?
- The Health Insurance Portability and Accountability Act of 1996 (HIPAA) also known as the Kennedy-Kassebaum Law addresses some of these concerns on a federal level. First, according to the HIPAA, genetic information is not considered a preexisting condition if the person has NOT had a diagnosis of the condition related to that information. Secondly, the HIPAA states that genetic information cannot be used to deny or limit insurance coverage for members of a group plan, but the act does not account for members of individual insurance plans. Thirdly, the HIPAA prohibits health insurers from charging a higher premium to one individual in a group of "similarly situated" individuals, however it does not guarantee that insurance premiums for all members of a similarly situated group will not be affected. Lastly, the HIPAA is specific to health insurance only; life and disability insurers do not have these restrictions.
- Have alterations in genes been found in specific ethnic groups?
- Yes, there are three mutations (found in BRCA1 and BRCA2) commonly associated with persons of Ashkenazi Jewish descent. A few other alterations frequently occurring in other ethnic groups (Icelandic, Norweigan, and Dutch) have also been found and are now being studied.
BREAST CANCER GENETICS NETWORK OF MICHIGAN
7217 CCGC, Box 0948 1500 East Medical Center Drive Ann Arbor MI 48109-0948