Be Your Own Best Advocate!

Diagnosis: The Basics

Metastatic Breast Cancer (MBC) is not one disease. You need to know and understand what kind of metastatic breast cancer you have so you know what treatments are appropriate. Your pathology report is generally the starting point for treatment decisions.

• Ask your doctor how your diagnosis was made, where in your body the disease has spread, and the extent (burden) of your metastasis. Keep asking questions until you are clear about the answers to these questions.
• Ask your doctor to explain what subtype of metastatic breast cancer you have. Subtypes are determined by what is making your cancer grow. For example, when cancer cells are fueled by the hormone estrogen, the subtype is called estrogen positive cancer; when there is an excess amount of a protein called HER2, the subtype is called HER2 positive breast cancer; if the cancer cells are not fueled by estrogen, progesterone, and the HER2 protein, the subtype is called triple negative breast cancer.
• Ask your doctor to explain your imaging tests and/or blood tests. Why is a test being done and what information does it provide? How often will this test be repeated? Keep copies of the results of every imaging and blood test for future reference.
• Do not hesitate to ask questions. For each appointment, write down three or four concerns and/ or questions. Questions can relate to your current treatment, symptoms such as pain, inability to sleep, something you did not understand from the last appointment and so on

Taking Charge of Your Treatment

• You should be told why a treatment is being recommended as well as the treatment’s potential benefits and harmful effects. How well has this treatment worked for other patients who have your kind of metastatic breast cancer?
• Weigh your options. Talk with others who have taken the treatment (your doctor may refer you to such patients; there are also closed Facebook Groups as well as online forums) and research the treatment on a reputable website. Take the time you need to be comfortable with your decision.
• Report any treatment symptoms to your doctor or nurse. You are not “complaining,” but rather helping your doctor give you good care. Sometimes a dose may be adjusted or medications given to relieve your symptoms. If you need a little break from treatment, ask your doctor.
• If your doctor wants to add something to your treatment, stop your treatment, or switch treatments, he or she should clearly explain why. You should have a chance to ask questions. Do you understand the goals of each suggested change? If you disagree, tell your doctor.
• Ask how you will know if a treatment is working. What tests will be used? Some patients also like to ask what the next treatment might be if the treatment fails to reduce the metastasis or keep the disease stable (no additional progression).

Second Opinions

If your disease progresses after treatment, sometimes it is helpful to get a second opinion. Some patients also seek a second opinion when they are first diagnosed.

A doctor giving a second opinion will start by reviewing your treatment records, especially your pathology report. When you see the doctor, he or she will ask you to tell your treatment story in your own words. How were you diagnosed? What have you done to date? How are you doing? After talking to you, the doctor will conduct an exam. At the end of the appointment, the doctor will give you his or her thoughts on your diagnosis or treatment options. Ask the doctor to provide a written summary of the second opinion—this will help you communicate with your current doctor.

How to Get Another Opinion

• Inform your doctor you intend to get a second opinion. People seek second opinions all the time—your doctor will not take it personally!
• Consider calling the nearest comprehensive cancer center to find a second opinion doctor. Tell the center you have metastatic breast cancer and they will help you set up an appointment, get your records and so on. Remember: You want an independent opinion—therefore, look beyond your current doctor’s practice.
• All of your records, including biopsies, pathology reports, scan results, blood test results, etc., belong to you. Typically there is a form to sign indicating you want these results sent to another healthcare provider directly—often times with no cost to you. Sometimes there will be a cost if you want to personally receive all these records at one time.

It might be time for a new doctor if:

• Your doctor is always rushed and does not answer your questions or concerns.
• Your doctor does not explain your diagnosis, your imaging results, or suggested treatment in terms that you can understand—even when you have let the doctor know you don’t understand what he or she is saying.
• Your doctor says “Because that was my decision” when you ask why a test or treatment is being ordered.
• Your doctor gets angry when you tell him or her you want a second opinion.
• Your doctor doesn’t listen when you talk about pain, anxiety, sleep problems or sexual issues.
• Your doctor doesn’t let you have your say.

Advice From Patients Living With MBC

MBCN has compiled the following suggestions from people living with metastatic breast cancer:

• Insist on a biopsy of your cancer–not only at the time of diagnosis, but also at the time of each progression. Sometimes, the biology of your breast cancer can change, and that change could impact the kind of treatment you should receive.
• Bring someone with you to your appointment who can be “a second set of ears” or who can take notes for you. Consider using your smart phone (with permission) to record the visit.
• During a second opinion, you may discover another doctor who explains things better than your current doctor.
• If your doctor does not bring it up, ask if you could benefit from a clinical trial.
• Learn as much as you can about your disease and all the options available.
• Join an online or in person support group for people with metastatic breast cancer.
• To cope with anxiety, get counseling.
• Stay as active as possible.
• Good nutrition and exercise are good complimentary medicine for your disease.
• Seek out survivor stories, disease information and sources of support at MBCN’s website: mbcn.org.