Understanding DCIS
- Causes of DCIS
- Genetic Testing
- Self Advocacy
- Decisions
- Screening
- Getting a Biopsy
- When DCIS is Diagnosed
- Getting a Second Opinion
- Psychological Impact
- Understanding Risk
- Treatment

Dictionary

FAQ's

Resources

References

Acknowledgements

Self Advocacy

"The stress of having cancer or of being the person watching a loved one with cancer makes everything you know useless and everything you need to learn hard."

When seeking medical information, there are three things to remember:

1. Look for medical professionals who specialize in diagnosing and treating breast disease.
2. Learn all you can about DCIS. Seek sources of credible and reliable information. Talk with cancer specialists. A word of caution — Internet chat rooms can be very confusing and the information may not be accurate.
3. Ask questions of your health care providers until you understand the answers and can make informed decisions.

Steps to take

Take time to gather information, determine who will be your medical team, weigh alternatives and make decisions. Ask your doctor what time frame you have to work with. Is it a month? Two months? While it is important to get treatment without delay, urgent or immediate treatment is usually not required.

Our health care system is large, complicated and can be chaotic and confusing. It is important for you to advocate for yourself. It is also a good idea to identify someone you trust to help you get information, go with you to doctors' appointments, get the details of your health insurance, and anything else that will reduce your stress level.

Some suggestions

• Get a loose-leaf notebook and keep records. Request and keep copies of all written test and consultation reports. List your questions. Write down the answers and recommendations you receive and make a note of who gave them to you. Take your notebook to your medical appointments.
• Take someone with you to your medical appointments as an "extra set of eyes and ears." Because you're worried, you won't remember a lot of what is said and this person can help you retain important information.
• Take a tape recorder to your medical appointments to help you remember what is said. Inform your doctor that you wish to record the discussion.
• Be prepared. Make a list of your questions when you go for tests and doctor appointments. You expect your doctor to be prepared; be sure you are prepared as well.
• Read. Ask questions. Speak up. If your doctor doesn't have time to talk with you when you are there, make an extra appointment just to talk.
• Take time to gather information. Do as much research as you can early on. Call the National Cancer Institute's Cancer Information Service toll-free at 1-800-4-CANCER. Not every person needs the same amount of information. Your goal in pursuing information is to get a sense of peace about which treatment is best for you.
• Get a second opinion — on your mammogram, your pathology, your treatment plan.
• Treatment is not an all-or-nothing situation. You have options. Understand the term "relative risk." Everything in life is a balance of risk and benefit.
• Ask for help. This is one of the hardest things to do. You may be used to self-sufficiency, but it makes others feel good to help you and it's good for you.
• Get a doctor you trust, one who cares, pays attention, knows breast cancer very well, and one with whom you can communicate.
• When you have a doctor's appointment, don't wait until the last minute to ask your most important questions.
• Try to stay calm through the process so that you can stay in control. It's okay to say that you need time to learn more and to make a decision that you are comfortable with.
• When you know your treatment plan, ask what you can expect and whom to call if you have questions — not only during the work week but on the weekends, on holidays and in the middle of the night.
• When your treatment is completed, ask who will follow your progress. Is it your surgeon? Your gynecologist? Internist? Oncologist? What problems go to which doctor?
• Find time to relax. Use visualization, music, prayer, meditation and any other calming practices for stress management.
• Ask for professional help to relieve the emotional distress (depression, anxiety, guilt, cancer phobia, and so on).
• Talk with your family. Let them know what is going on. If you have children, the information you provide needs to be age-appropriate. If you don't tell them what is going on, they will sense that something is wrong and may blame themselves or make up something completely different and incorrect.
• Be sure to talk with your spouse or partner. He or she is sure to be worried and have questions. Talk openly to avoid misunderstandings and to create the mutual support that is needed at a difficult time.
• Eat a healthy diet and exercise frequently; it's good for your health and reduces your stress level. If you drink alcohol, do so in moderation.
• Be sure that you understand that you did not cause this health problem.
• Do something nice for yourself every day.
• Consider getting help from other cancer survivors and support groups. Find out what special services — such as support groups, consultations, lectures and counseling — are available at your hospital and other local agencies.

Remember!

Don't panic
Take time to collect information
Get a second opinion on mammogram, pathology, treatment

Know that you can survive DCIS!