What to Do if Your Test Results Are Abnormal
No matter how much thinking you do in advance, you may feel overwhelmed if testing shows that you have an abnormal breast cancer gene. You'll need practical advice and accurate information to help you handle this new fact in your life.
Practical guidelines to follow:
- Carefully guard the privacy of your test results.
- Follow early cancer detection guidelines. Begin annual mammograms at age 25, or 10 years before the earliest age at which a family member was diagnosed — whichever comes first. Digital mammography may provide added benefit. MRI (magnetic resonance imaging) of the breast performed by experienced centers can also be very useful.
- Studies are under way to better define the value of these screening tests in women with abnormal breast cancer genes. And newer technologies, including PET (positron emission tomography) scanning are also being tested. If screening research studies are available to you, consider participating in them.
- Monitor your ovarian health with semiannual pelvic exams by a gynecologist, annual pelvic ultrasound with an intravaginal probe, and blood tests for a special protein called CA-125. Consider participating in a clinical trial evaluating newer methods of early detection.
- Ask your doctor whether you should take a cancer risk-reducing agent such as tamoxifen.
- Adopt a healthy lifestyle to stay well and possibly reduce the risk of cancer or its recurrence. This includes a low-fat, largely vegetarian diet, regular exercise, weight control, and only occasional consumption of alcohol.
- Consider family planning choices that may help lower your cancer risk. These include having children at a relatively early age (but only if you are ready to become a parent, of course) and avoiding any (or prolonged) use of hormone replacement therapy.
- If you don't want to have children, DON'T use birth control pills. Use barrier types of birth control: condoms or a diaphragm. Research has shown that birth control pills increase the risk of breast cancer in women with a BRCA1 or BRCA2 mutation.
- Consider preventive (prophylactic) surgery. A woman who has an abnormal breast cancer gene and develops breast cancer in one breast might opt for mastectomy of the affected breast and prophylactic removal of the other, healthy, breast. Because current ovarian cancer screening is limited, women with abnormal BRCA1 or BRCA2 genes may decide to have their ovaries removed once child-bearing is completed.
Getting emotional support
According to Sue Friedman, founder and executive director of Facing Our Risk of Cancer Empowered (FORCE) it's very important to be kind to yourself and give yourself the time you need to digest all the information, discuss all your options with an expert, and get the emotional support you need. "For those who test positive and haven't had cancer, there is a still an adjustment process and often a grieving process," Friedman says. "Those who test positive have a right to vent and to grieve, just as much as someone who has been diagnosed with a disease."
Friedman continues: "Everyone is so different and there are as many different reactions to a positive test as their are people who test positive! Having said that, there tends to be a sense of immediacy, that someone has to take action tomorrow. I encourage women to give themselves permission to totally digest the information, to grieve and vent as much as they have to before making any definitive decisions on what risk-management strategy to choose. I encourage them to consult with specialists who have expertise in management of high-risk patients and get several opinions.
"I also think it can be helpful to connect with others who have had a positive test — either via the FORCE message boards, our toll-free help line, or face-to-face via a support group. Sometimes family and friends who haven't faced these issues cannot totally understand and cannot always be as supportive as we wish. I know that personally, after learning I was positive, I couldn't find a single friend or family member who understood what I was going through. Later, down the road and after I founded FORCE it was so refreshing to connect with people who really 'got it.'"
An original video-on-demand educational initiative brought to you by Breastcancer.org and Comcast. Visit www.comcast.net/pinkribbon each week through the end of October for engaging, up-to-date videos and information about the fight to end breast cancer.