For starters, don’t read about survival rates on the internet.
“Breast” and “cancer” are never two words you want to hear together, but discovering you have metastatic, or stage IV, breast cancer can make a bad situation feel impossibly worse. A lot of this fear stems from some common misunderstanding about what metastatic breast cancer is, how it spreads, what the prognosis is, and available treatments.
The word “metastatic” simply means that the cancer has spread to other parts of the body beyond the original location of the tumor. The cancer originates in the breast, but the cells can travel to any other part of your body, leading to tumors in your lymph nodes, lungs, liver, bones, brain, or other places. Nearly 30 percent of women who are diagnosed with early-stage breast cancer will ultimately develop metastatic disease, according to The National Breast Cancer Foundation.
Each year about 255,000 people are diagnosed with stage IV breast cancer. While the majority are women, men can get the disease too. Approximately 41,000 people die of breast cancer each year and metastatic breast cancer is responsible in the majority of the cases, according to NBCF. The five-year survival rate is about 25 percent for women and 20 percent for men.
That may sound grim, but it’s important to know the more positive side of a metastatic breast cancer diagnosis. The field is changing quickly with more and more treatment options, and many patients are living long, productive lives for longer and longer periods. Here’s what a leading group of oncologists wish everybody knew about metastatic breast cancer.
1. Metastatic breast cancer is not a death sentence
Hearing that your breast cancer has spread throughout your body is definitely not good news, but every doctor we spoke to was adamant that metastatic breast cancer is often no longer the death sentence it used to be. “Many of the available treatments are very effective and may extend life expectancy many years,” says Dennis Holmes MD, a breast cancer surgeon and researcher and interim director of the Margie Petersen Breast Center in Santa Monica, California. “Some women even live a normal life span.”
One of the best ways to navigate the stressful period right after diagnosis is to find a doctor you really trust (and don’t be afraid to seek second opinons) and surround yourself with a solid support group of family, friends, or other breast cancer patients or survivors, according to Mitch Golant, PhD, a psychologist with Breastcancer.org.
2. Metastatic breast cancer isn’t necessarily like other metastatic cancers
Any cancer diagnosis with the words “stage IV” or “metastatic” in front of it is terrifying, but when it comes to breast cancer you may have less to fear than you may think, says Jack Jacoub, MD, medical oncologist and medical director of MemorialCare Cancer Institute at Orange Coast Medical Center. “Metastatic breast cancer is unlike other cancer types that spread—like lung or colon—and generally the prognosis is much better,” he says. “Women live longer and we have more therapies available; we routinely see women with metastatic breast cancer, especially that involving bone, living well over several years and feeling good.”
3. Metastatic breast cancer can’t turn into another cancer
Once your diagnosis of breast cancer is confirmed, it will always be breast cancer—even if it has metastasized, or spread, to other parts of your body. “Many patients think that cancer that has spread to the bone has then become ‘bone cancer’ or if it’s spread to the liver then it’s now ‘liver cancer,’ but breast cancer cells will remain breast cancer under the microscope and by every other characterization,” Dr. Jacoub explains.
4. A lot of factors go into cancer survival rates
In general, the five-year survival rate for stage IV metastatic breast cancer with metastases in other organs is a rather dismal 22 percent. But that number leaves out a lot of individual factors that can affect your prognosis, says Maxim Privalov, MD, oncologist and breast cancer specialist at Bookimed. These include the level of metastatic spread, the size of tumor(s), your age, your overall health, treatment options available, your doctor’s experience, and the clinic you’ve chosen.
This is why it’s so important to find a doctor you trust and then talk to them about your specific tumor biology, treatment options, and prognosis, rather than believing some number off the internet, he adds.
5. There are more treatment options than ever before
People hear breast cancer and automatically picture scorched-earth chemotherapy, but there are multiple other treatments available to women with metastatic breast cancer, Dr. Holmes explains.
Hormone therapy is the first line of treatment for estrogen positive (ER+), the most common type of breast cancer, Dr. Jacoub says. These include hormone-blocking medications like tamoxifen and hormone-inhibiting drugs like aromatase inhibitors. These can be taken as pills or injections and may produce wonderful results, particularly when used at the beginning of treatment, he adds.
There’s also promising new classes of what are known as targeted medications, which block the growth of breast cancer cells in specific ways, according to the NBCF. The fact that they’re targeted to very specific pathways that allow cancer cells to divide and spread means they typically have fewer side effects compared with chemotherapy and radiation. These drugs can be used on their own, with anti-estrogen drugs, or in conjunction with chemo. More drugs in this category are being developed and FDA approved frequently.
For the most aggressive kind of metastatic breast cancer—triple negative—there are exciting clinical trials using a type of medication known as immunotherapy. This new therapy uses the patient’s own immune cells to attack and kill cancer cells.
6. You might not even need chemo for treatment
It’s normal to hear “cancer” and automatically jump to “chemo” but that’s not necessarily the case anymore, says Dr. Jacoub. “One myth we hear a lot is the assumption that metastatic disease requires chemotherapy, which isn’t true for the majority of breast cancer cases,” he says. “It really depends on cancer subtype. For triple negative or HER2 types of metastatic cancer, chemo is generally recommended but they only make up about 20 percent of cases,” he explains. “However, the most common subtype, making up 80 percent of cases, is estrogen receptor positive, which typically responds very well to hormone therapies.”
7. Mastectomies have gotten a lot better
Mastectomies aren’t necessary in all cases of metastatic breast cancer—whether or not you get one depends on the cancer subtype, the tumor, and several other factors—but they are a fairly common treatment for metastatic breast cancer, Dr. Privalov says. “It may help stop the metastatic spread and prolong your life expectancy,” he explains.
If you end up in this situation, know that both the surgery to remove your breast(s) and the breast reconstruction after surgery have come a long way in the past few years. Losing your breasts may feel like a huge loss and understanding your surgical options—like using your own tissue instead of implants—may help you feel better about the process, he adds.
8. Palliative care may not be what you think
People hear the phrase “palliative care” and may assume it’s only for people who are dying but palliative care is really about increasing your quality of life, regardless of how advanced your disease is, Dr. Privalov says.
For metastatic breast cancer, palliative care can mean everything from talking to a therapist who specializes in breast cancer patients to medications that alleviate side effects like nausea, fatigue, and pain.
“Even if the cancer cannot be cured completely, doctors have options in palliative therapy to reduce breast cancer symptoms, increase your comfort, and help prolong life expectancy,” he explains.
While you’re focusing on getting the best treatment to kill your cancer, it’s important to take care of the rest of your body and life with mental and physical therapies, and that’s where palliative care may come in.