Finding out that you have a incurable disease like stage IV metastatic breast cancer can be completely overwhelming and fill your mind with a thousand questions. Thankfully, from the first appointment on, your oncologist can act as your guide and ally, telling you everything you need to know. And while each case of metastatic breast cancer is different, there are some general things your physician will likely want you to know. Here, two breast cancer experts share some of the biggies.
1. Your cancer is unique.
It’s a point that will impact every care decision you make: All breast cancer is not equal. “There are many types of breast cancer, and we need to understand the biology, behavior, and subtype of your specific kind to decide on the best treatments,” says Hope Rugo, MD, professor of medicine and director of breast oncology and clinical trials education at the University of California San Francisco. And these days, there are a lot more tools available to help classify your cancer than ever before.
“It’s an exciting time because we have genomic profiling,” says Erica Hamilton, MD, director of the breast and gynecologic research program at Sarah Cannon Research Institute, which provides community-based access to hundreds of cancer clinical trials a year. “We take a piece of tumor tissue and look for mutations, amplifications, and mistakes in the genes. We can see what makes your individual cancer tick and treat it accordingly.”
2. You didn’t do anything wrong.
Self-blame is all too common with a cancer diagnosis, and it shouldn’t be. “Sometimes, when breast cancer comes back and has metastasized, a patient thinks they must have messed up in some way,” says Dr. Hamilton. “But it didn’t come back because you chose the wrong treatment the first time or didn’t exercise enough — cancer comes back even if you’re committed to your therapy.”
3. Your treatment can be manageable.
One of the common beliefs about cancer is that treatment always leaves you nauseous and fatigued. But that’s not always the case. “Not only have cancer treatments gotten better than they were decades ago, so has supportive care, like medication that [helps prevent] nausea,” says Dr. Hamilton.
4. There are more treatments available than ever before.
The phrase “clinical trials” tends to bring up images of women with very few options who are grasping at straws. Think again. “Participating in a clinical trial gives you access to potentially helpful drugs early,” says Dr. Hamilton. “At every point in your cancer journey, you should ask your doctor if there’s a clinical trial that’s right for you.”
In fact, you might want to bring it up very early on, since sometimes you can’t join a clinical trial if you’ve already started a different treatment. “Make sure you talk to your doctor and tell them you know there’s a lot of research going on, and you’d like to consider both standard and emerging treatment options for your cancer,” says Dr. Rugo. “You don’t want to close any doors by waiting until after you start treatment.”
5. Statistics don’t tell the whole story.
More than 40,000 women die from metastatic breast cancer every year, and only 27 percent of patients diagnosed with it will survive past five years. Those are scary statistics, but doctors don’t want you to focus too much on them at the beginning. “I tell my patients that while this is something they are going to live with for the rest of their lives, it is treatable, and many patients do well and continue to live their lives,” says Dr. Hamilton. “It’s possible to continue enjoying your life and keep up with the activities you enjoy.”