Being diagnosed with metastatic breast cancer is an overwhelming experience. Cancer and its treatments will likely take up much of your day-to-day life. Your focus will shift from family and work to doctor’s visits, blood tests, and scans.
This new medical world may be totally unfamiliar to you. You’ll probably have a lot of questions about metastatic breast cancer, such as:
- Which treatment is right for me?
- How well might it work against my cancer?
- What should I do if it doesn’t work?
- How much will my treatment cost? How will I pay for it?
- Who will care for me while I’m going through cancer therapy?
Here’s some important information to help you prepare for what lies ahead.
1. Treatment won’t cure metastatic breast cancer
Knowing that you can’t be cured is one of the hardest parts of living with metastatic breast cancer. Once the cancer has spread to other parts of your body, it isn’t curable.
But incurable doesn’t mean that it isn’t treatable. Chemotherapy, radiation, and hormone and targeted therapies can shrink your tumor and slow your disease. This can prolong your survival and help you feel better in the process.
2. Your cancer status is important
Breast cancer treatment isn’t one-size-fits-all. When you’re diagnosed, your doctor will run tests for certain hormone receptors, genes, and growth factors. These tests help pinpoint the most effective treatment for your cancer type.
One type of breast cancer is called hormone receptor-positive. The hormones estrogen and progesterone help breast cancer cells grow. They only have this effect on cancer cells with a hormone receptor on their surface. The receptor is like a lock, and the hormone is like a key that fits into that lock. Hormone receptor-positive breast cancers respond well to hormone therapies like tamoxifen or aromatase inhibitors, which stop estrogen from helping cancer cells grow.
Some breast cancer cells have human epidermal growth factor receptors (HERs) on their surface. HERs are proteins that signal the cancer cells to divide. Cancer cells that are HER2-positive grow and divide more aggressively than usual. They’re treated with targeted drugs like trastuzumab (Herceptin) or pertuzumab (Perjeta) that block these cell growth signals.
3. You’ll spend a lot of time in medical buildings
Treatments for metastatic breast cancer require many visits with doctors and other medical staff at hospitals and clinics. You may wind up spending much of your time in a doctor’s office.
Chemotherapy, for example, is a lengthy process. It can take hours to administer intravenously. In between treatments, you’ll have to go back to your doctor for tests to make sure your current therapy is working.
4. Treating cancer is expensive
Even if you have insurance through your employer or Medicare, it might not cover all of your treatment costs. Most private insurance plans have caps — a limit on how much you’ll have to pay out-of-pocket before the plan kicks in. You could spend several thousand dollars before reaching your cap, though. During your treatment, you may be unable to work and draw in the same salary as you did before, which can make things more difficult.
Before you start treatment, find out the expected costs from your medical team. Then, call your health insurance company to ask how much they’ll cover. If you’re worried that you won’t be able to pay your medical bills, ask a social worker or patient advocate at your hospital for advice on financial aid.
5. Expect side effects
Breast cancer treatments today are highly effective, but they come at the cost of uncomfortable or unpleasant side effects.
Hormone therapies can make you experience many of the symptoms of menopause, including hot flashes and thinning bones (osteoporosis). Chemotherapy can make your hair fall out, and cause nausea, vomiting, and diarrhea.
Your doctor has treatments to help you manage these and other treatment side effects.
6. You’ll need help
Getting treated for breast cancer can be exhausting. Plus, chemotherapy and other cancer treatments can lead to fatigue. Expect that you won’t be able to accomplish everything you were able to do before your diagnosis.
Support from your loved ones can make a big difference. Reach out to your family and friends for help with chores like cooking, cleaning, and grocery shopping. Use that time to rest and regain your strength. You might also consider hiring help if needed.
7. You’re different from everyone else with breast cancer
Every person who is diagnosed with and treated for metastatic breast cancer is different. Even if you have the same type of breast cancer as someone else you know, your cancer isn’t likely to behave — or respond to treatment — in the same way as theirs does.
Try to focus on your own situation. While it’s good to get support from others, don’t compare yourself to others with breast cancer.
8. Your quality of life matters
Your doctor will suggest treatment options, but ultimately the choice of which ones to try is up to you. Choose the treatments that will extend your life for as long as possible, but will also have the most bearable side effects.
Take advantage of palliative care, which includes pain relief techniques and other tips to help you feel better during your treatment. Many hospitals offer palliative care as part of their cancer programs.
9. A clinical trial is always an option
If your doctor has tried all of the existing treatments for metastatic breast cancer and they haven’t worked or they’ve stopped working, don’t give up. New treatments are always in development.
Ask your doctor if you can enroll in a clinical trial. It’s possible that an experimental therapy could slow — or even cure — a cancer that once seemed untreatable.
10. You’re not alone
In 2017, were estimated to be living with metastatic breast cancer in the United States. You’re already part of a community filled with people who know exactly what you’re going through.
Connect with them via online and in-person support groups. You can find them through organizations like the American Cancer Society, or through your cancer hospital. You can also seek out private counseling from therapists or other mental health providers when you feel overwhelmed.