12 Things You Can Do After Getting a Breast Cancer Diagnosis

A breast cancer diagnosis is overwhelming: It’s a whole lot of information to process within a very short period of time.

“I always stress to patients to ask more questions,” says Paula Rosenblatt, MD, a medical oncologist on the breast team at the University of Maryland Greenebaum Comprehensive Cancer Center. “I really only expect patients to remember 10 percent of what I’m saying.”

Every patient varies in how much they want to know about their diagnosis and how involved they want to be in their health care decisions. But arming yourself with information can be empowering. “When you’re diagnosed with cancer, control is taken away from you. Focus on things you can control,” Dr. Rosenblatt says.

A team of health care professionals will be there to guide you through the process, from understanding your breast cancer treatments to your long-term follow-ups and prognosis. Here are 12 things you can do to help you process your diagnosis and take charge of your health.

1. Understand your diagnosis.

Once you receive your breast cancer diagnosis, it’s important to take time to do the research to understand what it means for your health. The following factors impact the staging of a tumor and the prognosis:

• Type of breast cancer. Most types of breast cancer form in the milk ducts and are known as ductal carcinoma, says Dr. Rosenblatt. Others form in the milk-producing lobules, known as lobular carcinomas. There are also other much rarer forms of breast cancer, such as sarcoma (connective tissue) or Paget’s disease (skin of the nipple).
• The staging of the tumor. Staging is determined by several factors, including the size of the tumor, whether it’s noninvasive or invasive, and whether it has spread to the lymph nodes. Your cancer is given a stage from least to most advanced with the Roman numerals 0 to IV.
• Hormone sensitivity. Tests on breast tissue samples look at whether tumors are driven by estrogen and progesterone. A “receptor-positive” tumor is sensitive to these hormones. Doctors will also look at whether the tumor tests positive for human epidermal growth (HER2) receptors, which impact the growth and spread of cancer.

In the past, Dr. Rosenblatt explains that tumors were only staged on size and whether they had spread, or metastasized. “Now there’s a prognostic component that involves receptors as well,” she says. “That change gives more of prognostic implication. For example, we know triple-negative tumors are more aggressive than estrogen-positive ones.”

2. Learn about your treatment options.

Treatments vary a lot depending on the type of breast cancer and on the tumor stage. While surgery is almost always necessary, chemotherapy and radiation may or may not be depending on a number of factors. If you had a mastectomy, for example, you may not need radiation. If you have an estrogen-positive tumor, you may not require chemotherapy. “There are so many different combinations of treatments,” says Dr. Rosenblatt. “It’s a very complicated discussion with a team of physicians.”

Ask your doctor how your various treatment options change your prognosis and the potential complications or side effects. It’s also a good idea to ask about the logistics and timing of the treatment plan, suggests Carlos Barcenas, MD, an oncologist in the Department of Breast Medical Oncology at MD Anderson Cancer Center. That helps you to “plan ahead and organize your work or study schedule and support system accordingly,” he says.

3. Consider a second opinion.

“It’s never a bad idea to get a second opinion. It can help to confirm that you are doing the right thing for your breast cancer,” says Amy S. Clark, MD, a medical oncologist and assistant professor of Hematology-Oncology at the University of Pennsylvania Perelman School of Medicine, and a member of the Basser Center for BRCA at the Abramson Cancer Center.

That said, a second opinion isn’t always necessary—especially if your diagnosis is relatively straightforward and uncomplicated. “A second opinion may also delay starting treatment, which could be an issue,” says Dr. Barcenas.

4. Get to know your treatment team.

A breast cancer treatment team includes a:

• Breast surgeon, who surgically removes tumors and evaluates lymph nodes.
• Medical oncologist, who’s in charge of systemic therapies including chemotherapy, biological therapy, endocrine therapy, and immunotherapy, as well as long-term surveillance once your treatments are complete.
• Radiation oncologist, who manages radiation therapy to keep breast tumors from recurring.
• Plastic surgeon, who performs breast reconstruction once the tumor is removed.

It’s also a good idea to ask your hospital or insurer if they work with breast health navigators. These nurses guide women through the complicated journey that follows a breast cancer diagnosis, from considering treatment options to attending post-treatment wellness classes. “The more you learn about your diagnosis and your options, the more power you'll have," says Sandy Cross, a breast cancer patient navigator in Huntsville, Alabama.

Other care providers may include a dietitian, a genetic counselor, and a physical therapist. How you find these practitioners depends on the hospital where you’re being treated, but “most oncologists work in teams and are usually referred to by the patient’s primary care provider or the first oncologist seen on the team,” says Dr. Barcenas.

“Ask friends or family for recommendations or look up providers in a specific health system that you know is covered by your insurance,” suggests Dr. Clark.

5. Ask about genetic testing.

Discuss genetic testing with your doctors early on in your diagnosis. Genetic testing isn’t recommended for everyone. Doctors and insurers refer to a set of parameters known as the National Comprehensive Cancer Network (NCCN) guidelines that include factors like your age, family history of cancer, type of cancer, and ethnicity to make the call.

If testing finds you have a germline mutation, “this will determine the overall treatment plan, including the type of breast surgery recommended,” says Dr. Barcenas.

6. Look into fertility preservation.

If you’re hoping to get pregnant in the future and are undergoing chemo, ask about fertility preservation options like egg freezing. “Chemo can diminish fertility. It’s very important to address that prior to starting treatments,” says Dr. Rosenblatt, who refers patients to her hospital’s fertility center.

7. Check your health insurance.

“It’s hugely unfortunate how expensive cancer care is and how many out-of-pocket expenses there are for many women,” says Dr. Rosenblatt. Every insurer is different. Verify your copays, and check that your doctors are in-network and that prescription drugs are covered, Dr. Rosenblatt advises, to avoid a surprise on your medical bill. Your pharmacy should also check with your insurance before they order any meds. As a general rule, call your provider if you’re not sure whether a treatment is covered.

Many women aren’t aware of the Women’s Health and Cancer Rights Act of 1998, a federal law that guarantees that “when health insurance provides coverage of medical and surgical benefits for mastectomy, it must also provide coverage for breast reconstruction, prosthesis, and physical complications from surgery.”

8. See if you can continue to work.

Ask your doctor whether you’ll be able to work, study, or care for your family. The answer depends on the surgery and whether you’re having chemo. “I think patients are very concerned about what they’ll be able to do during treatments,” says Dr. Rosenblatt. “It’s a relief when I say most of my patients are able to continue working. It can also be a relief when I say I can fill out an FMLA form so they can take time off.”

9. Gather your support team.

Assemble a band of people you can count on to offer both emotional and practical support. Designate family and friends to help you with everyday tasks that may become difficult, such as driving to appointments and doing laundry. “Support from family and friends is crucial,” says Dr. Barcenas.

If you’re older, ask your doctor about extra assistance—anything from transportation to meals on wheels to additional nurse checks. Your care team is there to help with these kinds of social supports too, says Dr. Rosenblatt. “Figuring out these details early on will give you a sense of control," says Cross.

10. Request therapy, if you want.

Whether or not you’ll need to see a mental health provider depends on whether you have symptoms of anxiety or depression or a history of mental health issues. But Rosenblatt often suggests therapy to her patients at the initial diagnosis. “Everyone deals with it differently, but it’s not uncommon to have stress reactions, and it can be very helpful to talk to a therapist,” she says.

11. Develop a long-term plan.

Keep focused on the journey ahead. Talk to your doctor about your long-term roadmap: How long will you be on hormone medicines? How long and how often will you need to check in with your doctor? How often will you need mammograms? And what are additional screenings you’ll need? Also ask your healthcare team for a wellness programs to join after you finish treatment, which can address everything from diet modifications and exercise to your sexuality.

"It's important to know that most breast cancer patients are survivors,” says Cross. “It won't always be easy, but believe that you're going to come out on the other side. Always look forward.”

12. Try to stay positive.

A breast cancer diagnosis can feel overwhelming. As much as possible, continue with your normal routine, suggests Dr. Barcenas. Exercise is an excellent tool to boost your energy, significantly reduce anxiety, improve treatment tolerance, and even decrease the risk of the breast cancer recurring, says Clark. Meditation can also help. Remember that there are new drugs approved almost monthly for breast cancer and many, many treatment options. “Even though it’s scary to be diagnosed with breast cancer, it is a highly curable and treatable disease,” says Dr. Clark.