Getting organized may help you cope with the emotions you’re feeling.
“When patients are diagnosed with metastatic breast cancer, they can experience a wide range of feelings, anything from sadness, which is the most common, to anger, to disbelief,” says Natalie Berger, MD, hematologist and oncologist at The Mount Sinai Hospital in New York City.
Metastatic breast cancer, or “advanced” or “stage IV” breast cancer, means the cancer has spread beyond the breast and has affected other organs in the body. At this stage, the breast cancer is typically not curable, but can be treated to reduce the disease progression, improve quality of life, and prolong life.
Says Dr. Berger, “I tell my patients that these feelings that they’re experiencing are completely understandable. When you hear this word, and you’re going through this diagnosis, it’s very hard to cope, and everybody copes with these emotions differently.”
One way to help yourself cope with the diagnosis is to become an active player in your treatment team. Research shows that those who are involved in their treatment feel more empowered and less stressed during the treatment process than those who are not, and in many cases, it helps them have better treatment outcomes.
If you’ve been diagnosed with metastatic breast cancer, here are the recommended next steps, according to Dr. Berger:
1. Pick the right doctor
“It has to be somebody who [you’re] comfortable with and trust,” says Dr. Berger. It is completely reasonable to meet with different doctors in your area (or beyond) to find someone you feel compatible with. You should also seek someone who has treated your type of breast cancer before.
2. Be prepared to ask your doctor questions
Arm yourself with the appropriate knowledge to be an active member of the team. To do this, go into every appointment with questions in mind.
Dr. Berger suggests questions like:
What is my stage?
What is my diagnosis?
What is my subtype of breast cancer?
What are the expected side effects of this treatment?
Who will be on my breast cancer care team?
What is my prognosis?
The prognosis can be “very hard to predict,” says Dr. Berger, “but it’s an important question to talk to your doctor about.”
You can expect to have a large care team for your treatment for metastatic breast cancer. “It will include several different doctors: a medical oncologist, a surgeon, and a radiation doctor,” says Dr. Berger. “It may also include a physician assistant, or a nurse practitioner, or a nurse who [will] work closely with your doctor.”
In some cases, your cancer care team may also include support players, like a social worker, nutritionist, or a chaplain.
3. Get organized + keep your records handy
“It’s also extremely important to be organized, to have copies of your records: your pathology reports, your laboratory values, and any imaging that you may have, so that when you are speaking to doctors, you have this information with you,” says Dr. Berger.
Consider making a binder or having a file folder to hold all of these records. This can be especially helpful when you are seeking second (or third) opinions and visiting with multiple doctors.
4. Write down your questions *before* your visit
Having questions in your head is good, but writing down your questions is better. It’s easy to forget questions, especially if you’re distracted or stressed about your diagnosis and treatment. It’s also beneficial to take notes of your doctor’s answers, since it can be easy to forget that as well.
5. Bring a trusted friend or family member
If you’re worried about taking in all that information on your own, enlist a friend or family member to attend your appointments with you. Not only can they offer emotional support, but they can act as another set of ears.
6. Call your doctor if you have questions later
If you forget a question, or think of additional questions upon getting home, it’s encouraged to contact your doctor. Don’t feel “silly.” Your provider truly wants you to understand and feel confident every step of the process.
“Having metastatic breast cancer is a part of your life, but it is important to not let it become your life,” says Dr. Berger. “I tell [my patients] that it’s still important to do the things that they love and enjoy every day to the fullest because that’s the most important thing in the world, no matter what your diagnosis is, even if you don’t have cancer.”
If you have breast cancer. Atlanta, GA: American Cancer Society. (Accessed on January 31, 2020 at https://www.cancer.org/cancer/breast-cancer/if-you-have-breast-cancer.html.)
Systemic treatment for metastatic breast cancer: general principles. Waltham, MA: UpToDate, 2019. (Accessed on January 31, 2020 at https://www.uptodate.com/contents/systemic-treatment-for-metastatic-breast-cancer-general-principles.)