Living With Triple-Negative Metastatic Breast Cancer
Published in the Spring 2014 Issue of Insights on Metastatic Breast Cancer
Receiving a diagnosis of metastatic triple-negative breast cancer can initially sound triple scary: The cancer does not respond to hormonal or HER2-targeted therapies. In addition, since only about 10 to 20 percent of breast cancers are triple-negative, you may feel alone in living with the disease.
Yet, many chemotherapy options are available to treat the disease, other medicines can lessen negative side effects, and there is emotional support to be found. Banding together, women with TNBC are raising awareness of the issues surrounding this diagnosis, while doctors and researchers actively focus on finding new treatments. TNBC, they say, is the next frontier in the development of new targeted therapies.
Treating Metastatic TNBC
A myth about treating TNBC is that there are not many effective treatment options. The truth is that an array of chemotherapy treatments can improve your care.
"The list of approved and available chemotherapy drugs for treating metastatic triple-negative breast cancers is big,” says Lisa A. Carey, MD, medical director of the University of North Carolina Breast Center, who devotes much of her research to TNBC.
So how do you choose from the many available chemotherapy options? According to George W. Sledge, Jr., MD, oncology division chief at the Stanford University Medical Center, “at every point in the process of making treatment decisions, there needs to be a collaborative effort between doctor and patient.”
Dr. Sledge emphasizes the importance of talking with your doctor about how you wish to balance the goals of lengthening survival and maintaining your quality of life. And that balance, he says, “can change over time.”
Dr. Carey agrees. “I help my patients pick chemotherapy [medicines] based as much on side effect profiles as evidence of efficacy,” she explains. There are so many options to choose from, and while one might not be more effective than another, each can have very different side effects for different women.
Right now it’s hard to predict how well each person might respond to a particular therapy. The way to find out how a treatment will work for you is to try it, says Dr. Sledge. Still, he predicts that “in the next few years, we will be able to analyze the genetic makeup of individual patients’ cancers and have a much better idea of how each cancer will respond to different treatments.”
Another important point about treating metastatic TNBC is that “you can certainly reuse medicines a woman may have been treated with before, during adjuvant therapy,” says Dr. Carey. Some women worry that if they’ve had chemotherapy treatments in the past, and then the cancer comes back, they will not be able to get those treatments again.
Just because a particular treatment failed to get rid of the primary disease does not mean it can’t control it, Dr. Carey explains. Aside from anthracyclines that can have a negative effect on your heart, which is greater with ongoing use, chemotherapy options for metastatic TNBC are not limited to those you’ve never tried before, she emphasizes.
Clinical Trials for Metastatic TNBC
Intensive research efforts are underway to find subtypes of TNBC that respond to new and emerging targeted treatments. Participating in a clinical trial gives you the chance to possibly benefit from one of the new treatments or, at the very least, receive the best available therapies under close medical watch.
Like every treatment decision, taking part in a clinical trial is a personal choice. Whether it makes sense for you may depend on your life situation, your distance from the site where the trial takes place, and how you want to treat the disease.
“I am a big advocate of participating in clinical trials,” says Dr. Carey. However, she “is not a big advocate of disrupting your whole life to participate in a trial,” especially if it requires moving far from friends and family for a long time. “It depends on each person’s priorities and how practical and compelling the trial is,” she explains, adding that you can ask your doctor to help guide you through those decisions.
Dr. Carey recommends enrolling in clinical trials if they are easy for you to access, unless there’s a specific reason for you not to be on a trial. This recommendation includes trials of first-line metastatic treatment, she adds.
Similarly, Dr. Sledge suggests all the people he treats consider clinical trials if they are available and reasonably convenient.
"It’s always important to look at non-standard options offered on trials,” he explains. It’s also important to realize that most doctors who are enrolling people on clinical trials right now are not just at big medical centers like Stanford, but are in private practice. “So there are more options for trial participation than you might think.”
To find clinical trials you are eligible to take part in, talk with your healthcare team, search ClinicalTrials.gov, and visit our “Featured Clinical Trials” page at lbbc.org.
Dealing With the Emotional Impact
There may be many chemotherapy options and clinical trials for metastatic TNBC. Still, for Michelle Belt, 52, from Charlotte, N.C., who has been living with the disease since September 2012, one failed chemotherapy attempt felt like more than enough.
“The first chemotherapy didn’t work,” Michelle recounts, “and I wanted to get on a clinical trial where I wouldn’t have to get more chemo. But I didn’t qualify for the ones that were available, so I went with no treatment for 6 months. I finally started feeling well again and didn’t want to undergo chemo again, but I also knew I had to do something to keep treating the disease.” Thankfully, she says, she found Dr. Carey who helped her choose her next chemotherapy treatment — one with fewer negative side effects.
Finding a doctor she trusts has been extremely important to Michelle. Reaching out to other women who are going through similar experiences was another crucial factor in helping her cope with her diagnosis and treatment.
“At first I felt very alone with the diagnosis,” she says. “Then I reached out to a volunteer with the American Cancer Society and asked to be connected with someone who had a similar diagnosis to mine.”
The woman who responded to Michelle’s request was “an incredible resource,” she says. “Plus, I’ve found more women in my situation and we’ve started a triple-negative support group,” she adds.
Lori Hernandez, 43, from Portage, Mich., agrees that connecting with women undergoing similar experiences is key to coping with the sometimes overwhelming emotions that come with a metastatic TNBC diagnosis.
“I reached out to the LBBC Helpline to find someone who had taken the chemotherapy treatment I was considering,” says Lori. “Someone called me within 24 hours and I felt so much better after speaking with her!”
For Lori, in addition to the Helpline support, a physical therapist and counselor are critical members of her treatment team. “Having access to these support professionals has made me a lot stronger mentally, emotionally, and physically,” she says.
Unlike Michelle, Lori is not looking at clinical trials as an option right now. “I want to try all the conventional options first,” she says. “With two kids [ages 8 and 12] I have a busy lifestyle and need to know what I’m up against. On clinical trials they can’t really tell you what to expect.”
Ultimately, what keeps Lori going is “searching out success stories and trying to find people who have been living with advanced TNBC [to] give me encouragement and hope,” she explains. “If they can do it, I can do it.”
Misa Ingalls, 52, from Seattle, highlights the importance of focusing on loved ones to help keep her approach positive. “I enjoy having people around me,” says Misa, “and being kind to them helps keep my spirits up.”
Michelle, Lori and Misa all recommend researching treatment options and learning as much as you can about the disease. Still, “it can be upsetting,” says Michelle, “so be careful what you read online.” The best information, she emphasizes, comes from medical professionals and from women who are going through similar experiences.
In addition to educating yourself, Michelle adds, it’s important to educate those around you. “I want to make sure people around me know what I’m up against,” she says. “Most people don’t know what triple-negative means. You have to make sure they know it’s not just something you can take a pill for and you’re better.”
Raising TNBC Awareness
As awareness about the issues surrounding TNBC increases, within the breast cancer community and beyond, some women facing this diagnosis are finding themselves feeling less isolated.
March 3, 2013 (3-3-13) marked the first Triple-Negative Breast Cancer Day, an event that organizers plan to promote yearly to increase awareness of TNBC and raise funds to support research for new therapies.
For those attending LBBC’s Annual Conference for Women Living With Metastatic Breast Cancer from April 25 – 26, 2014, in West Conshohocken, Pa., there will be a specific workshop for women with triple-negative disease.
Misa wishes to remind all women with metastatic TNBC that “there’s so much research going on, and triple-negative breast cancer is the next frontier. There’s a lot more hope with everything that’s happening out there, so take it day to day and enjoy the people around you.”