Metastatic Breast Cancer: The Advice I Needed Most
When breast cancer spreads to other areas of the body such as the liver, lungs, or bones, it’s known as stage IV, or metastatic breast cancer. Metastatic breast cancer (MBC) is considered incurable, and five-year survival rates are about two-thirds lower than cancers that haven't spread, according to the American Cancer Society. But numbers like that never, ever tell the whole story. Today, women and men with MBC are living longer, better lives than ever before. Here is what patients who have been living with MBC—for three, six, even 23 years—want other patients and their loved ones to know.
Patient to Patient: Statistics Do Not Dictate Your Journey
“What has stuck with me during my 16 years of living with metastatic breast cancer is 'You are a statistic of one.' I especially think of this when I hear that a friend with my type of metastatic disease has passed away,” says Shirley Mertz, chair of the Metastatic Breast Cancer Alliance. The five-year average relative survival rate for MBC may be 27 percent, but how long an individual patient lives depends on a huge number of factors including age, type of tumor, general health, treatments and how much the cancer responds to them, according to the American Cancer Society). Remember, your illness and experience is unique to you.
The First Few Months are the Most Stressful
"I have lived with stage IV breast cancer for 10 years, and I can honestly say wrapping my head around this diagnosis was incredibly difficult," says Katherine O'Brien, a patient advocate with the Metastatic Breast Cancer Network. "I have had many challenges as result of this disease but nothing was harder than the stress of those first few months. Don’t do anything drastic, like shaving your head or cashing in your 401k, until you have a better idea of what you are dealing with."
Look for a Breast Specialist, Not Just a Cancer Doc
“One thing I wished I'd known at the beginning of my metastatic diagnosis was the importance of having an oncology breast specialist,” says Jen Heatherly, 47, a health coach in Vista, CA. “When I was diagnosed with stage IV cancer, the oncologist in the hospital did a great job getting me started on oral medications. However, when that line of treatment failed, and we were discussing other options, he made the comment, ‘You know more about the new drugs than I do,’" she says.
"My confidence in him went from about an 8 to 0 instantly, so I started asking other people with cancer about their doctors," Heatherly continues. My current breast oncologist is comfortable and confident when addressing my questions. At one point, we discussed a clinical trial, but because my current quality of life is good, she didn’t feel that the risk of side effects was worth it. I highly value her opinion.”
Seek an NCI Cancer Center If You Can
Along with finding a oncological breast specialist, seek care at a top research and/or teaching hospital. "I wish I had started at an National Cancer Institute-designated cancer center. They are on the cutting edge of research, the best of the best," says O'Brien. "You can find a list online. If it’s impractical to pursue care at an NCI center, you can at least seek a second opinion at one."
Delegate, Delegate, Delegate
“A dear friend, who was also a breast cancer survivor, told me that ‘Cancer takes a village,’ recalls Christine Hodgdon, 34, who serves on the Patient/Advocate Advisory Group of the Metastatic Breast Cancer Alliance. “A new diagnosis can quickly take over your life and become a full-time job. The best thing you can do for yourself is to allow those who love and support you to help," she says.
"Even better, delegate to family and friends exactly what you need, whether it be preparing meals, scheduling appointments, accompanying you to treatments, watching your children, caring for pets—the possibilities for support are endless! This was a difficult lesson for me to learn, but once I started delegating, everyone (myself included!) was much happier.”
Get to Know Other Patients
“When you are ready, meeting other MBC patients will be your greatest source of comfort and solace,” says Hodgdon. “You are not alone. There are many others who have been diagnosed metastatic while young, pregnant, just before their wedding day, or just as their career was taking off.
"These other patients know better than any doctor how to overcome the helplessness one feels after an MBC diagnosis. No matter where you fall on the MBC spectrum--newly diagnosed, in active treatment, near the end of life, or stable with no evidence of disease-- you can always find someone to share the space with you.”
Keep a Journal
Stephanie Walker, 60, a self-described MBC thriver and advocate in Tarboro, NC recommends keeping a notebook handy at all times to jot down important dates, questions, thoughts, and emotions.
“I journaled during treatments and took down the names of technicians and nurses along with which treatments they were administering. And I made notes while I was with my doctor,” says Walker, who was diagnosed in 2015, but has been stable after treatment—with no evidence of active cancer—since 2016. “I also wrote my deepest thoughts and expressed my emotions, including sometimes my anger.”
Not only will a journal help you remember details about what your doctors say during appointments, you can also track emotional and mental-health symptoms like anxiety or depression. A visual reminder can make it easier to spot changes in how you're feeling and prompt you to seek extra support when you need it.
Your Quality of Life Matters
“When I was first diagnosed in 1996, I went into fight mode: Do anything at all costs,” says Susan Rafte, 55, a member of the Patient/Advocate Advisory Group of the Metastatic Breast Cancer Alliance. “Fortunately this approach worked for me. However, the more I have walked with others living with metastatic disease, the more I realize how important it is to step back and look at the big picture. We can become very desperate and lost when facing a terminal disease, and at times we need to remember or be reminded that quality of life is an important tool to make decisions.”
Friends and Family: Listen More, Talk Less
“Supporting someone after an MBC diagnosis is really difficult, but the best advice I can offer is to listen more, talk less,” says Hodgdon. “Some people will talk a lot about their diagnosis, others will withdraw. Respect the needs of the person whose world has been turned upside down. And if you need support, do not rely on the patient to give it to you. Seek outside help by joining a support group, seeing a counselor, or sharing with trusted friends. The patient should not have to bear the burden of comforting others. They are facing their own mortality while likely enduring grueling treatments that leave them physically fatigued.”
If You Don't Know What to Say, Just Say That!
"I received unconditional and immediate support from friends and family. I was especially touched that people whom I didn’t know well took the time to send me cards or ask how I was doing," says says Katherine O'Brien, a patient advocate with the Metastatic Breast Cancer Network.
"But it’s best to avoid saying things like, 'Everything will be fine!'(you have no idea if things will be fine) or 'You got this!' (Yes, I know I have this. Hence my struggle to cope with this crushing news!) You can always say, 'I am sorry you are dealing with this.' Or 'I don’t know what to say. How are you doing with all this?' Or, as one my brothers said when I told him, 'Well that sucks.'"
Offer to Set Up a Meal Train
“My friends have been so incredibly supportive every step of the way,” says Marina Kaplan, who’s been living with a particularly aggressive type of cancer known as metastatic triple negative breast cancer for six years. “Something that helped a lot was that friends set up a ‘meal train’ for rides and meals that I can activate whenever needed. I don't use it often, but it's great to have it and be able to specify what I need and when. People always ask what they can do for us and having them be a part of the meal train group enables them to help in a meaningful way.”
Be Careful Not to Blame or Shame
It's really common for people with MBC to feel as though they're to blame for their diagnosis, notes Hodgdon. So “avoid questions that seek to determine how the person came to have cancer, like 'Did you forget to get a mammogram? Did you wait too long to see a doctor? Do you think your diet played a role?' They serve no purpose but to shame the patient for all the things they did or did not do to result in a cancer diagnosis.”
Please Support Our Families, Too
“I want others to know that my children and husband are also living with this disease, so please support them, too,” says Helen Black, a mother of nine who was diagnosed in 2017 and now volunteers with Living Beyond Breast Cancer. “All of my children were able to take a turn coming chemo with me, except my youngest who was 10 years old. Guests had to be at least 12," she says.
"That was hard for her, and for me, too," Black continues. "But a dear friend worked something out with the nurses and she was able to bring my daughter to see the suite, and then we had a snack together in the kitchen area. From that point on, Rachel felt more at ease about my weekly infusions, and more importantly, that visit made her feel like she was part of my team.”
Remember That We Have Lives Outside of Cancer
“My friends understand that I don’t want cancer to define me,” says Sherroll Reese, 38, a talent-acquisition specialist in Austin, TX. “We still talk about the same things that single woman talk about—love, relationships, sex and many other topics, but my cancer is never the main topic of conversation. They allow me to share what I want to share and never try to pull my feelings, health updates or fears. Still, if I bring it up they’re all ears.”
Reese’s friends also hit the gym with her, like any other gym buddy. “I have continued working out, maybe even harder than I did before my diagnosis. I always laugh and say ‘I have 99 problems, but my heart’s not one.’ Many of my friends have taken classes with me at my favorite spot to keep me motivated.”
More Help and Advice
Although metastatic breast cancer hasn’t always gotten the attention or research focus that it deserves, there are now several amazing organizations specifically dedicated to educating and supporting MBC patients and their families. Start here:
Metastatic Breast Cancer Network The MBCN is a wealth of information for the newly diagnosed patient and MBC veterans. You can find information on everything from interpreting a new diagnosis to detailed info on specific treatments. You can also browse current clinical trials looking for patients, read dozens of stories of MBC patients, and even get info on financial assistance for treatment.
Metavivor Metavivor began as a patient support group in Annapolis, MD, and then grew into a major research-funding powerhouse. In 2018 alone, the group awarded more than $2.3 million in grants to researchers studying MBC. Metavivor is still dedicated to patient support, and facilitates dozens of peer-to-peer groups around the United States.
Metastatic Breast Cancer Project This project offers patients an opportunity to participate in important MBC research right from their own home—by offering top researchers access to their medical records, providing a saliva sample for DNA analysis, and filling out a health questionnaire.