Metastatic Breast Cancer Awareness Day 2014

October 13 was National Metastatic Breast Cancer Awareness Day. Managing Editor Claire Nixon talks with oncology counselor Sage Bolte, Ph.D., about how to deal with October’s pink onslaught if you’re living with metastasis and Breastcancer.org Medical Adviser Brian Wojciechowski, M.D., on where we are today with metastatic treatment options.

In the media overload of Breast Cancer Awareness Month, which often focuses on early detection and new diagnoses, a national day acknowledging metastatic disease is a critical step forward. Still, most people living with metastatic disease would agree that more is needed.

This isn’t an easy month for many women and men living with metastatic breast cancer. Some even refer to Breast Cancer Awareness Month as “Focktober.” Pink product placements, pink happy hour cocktail specials, and the well-meaning gestures of friends bearing pink-ribboned gifts can often trigger feelings of alienation for people whose disease can be controlled, but not cured.

Recently, we surveyed our community members about what they think Breast Cancer Awareness Month should strive to accomplish. Our metastatic community had these things to say:

• “…[This month] should mostly discuss metastatic. I still know so many people who do not know what metastatic breast cancer means.”
• “I would like to see it become ‘breast cancer research month.’ We need a cure — especially for those who are stage 4.”
• “Make it less pink and sexual and actually get real facts out there and focus only on how to cure metastatic breast cancer of all kinds. Stop focusing on breasts and how we need to save breasts and focus on saving people.”
• “Separate early-stage from mets and educate the public about the difference and difficulties.”
• “I’m Stage 4. Could I be more aware?”

“More studies are showing that many women living with advanced disease can have a high quality of life for a number of years,” says Sage Bolte, Ph.D., L.C.S.W., O.S.W.-C and director of Life with Cancer, an Inova Health System not-for-profit support and education program in Fairfax, VA. “But many friends or family cannot wrap their heads around the idea of a friend or loved who’s in ongoing treatment several months or years after a metastatic diagnosis. Friends may say, ‘What? You’re still on treatment? I thought you were finished? When will you be done?’”

Pam Notaro of Cherry Hill, NJ has been living with metastatic breast cancer for the last year and a half. “When it flares up, it flares up everywhere other than the breast. It’s not the same as it was the first time; it’s systemic. So when you put a breast cancer awareness banner in front of someone, and they have cancer in their kidneys, liver, and bones, they’re not connecting with the messaging that’s going on out there. Like me — I’m not connected with a lot of it because I’m fighting a different battle than people with early-stage breast cancer — it’s totally different, like night and day. Understanding that it’s still breast cancer is the hard part. They think, ‘She beat it once; she’ll beat it again. In 6 months she’ll be fine.’ But because it’s not isolated to one area, it never goes away, and you’re always fighting.”

Dr. Bolte says, “So use this month as an opportunity to educate. You can say something like, ‘This disease is something I will live with for the rest of my life, and we’ll continue to look for treatments that manage it. We are always hopeful.’ During the month of October, there is a lot of focus on ‘beating breast cancer,’ so you might find that many of your friends or family want to ‘celebrate’ with you and may not understand that you aren’t cured, and this might cause you mixed feelings. It’s okay to voice that — you can have a fighter spirit and feel frustrated that you have to educate about how you will have to live with this disease forever.

“Know yourself and be able to communicate what your needs are,” Dr. Bolte says. “If you know that your friends will be inundating you with pink and that doesn’t work for you, then guide them to another way of supporting you. Educate your family and friends. You could say, ‘There are other ways you can support me. You can give to this charity, or send emails to friends about mammograms, or about mindfulness and enjoying today. Find some other way to acknowledge a month that is important — but still, it’s just a month. Instead of making it about October, maybe the first week of every month you can do something to show me your support like sending a card or note that is uplifting and supportive.’”

Besides the emotional effects October can bring, there’s also the larger picture of where we are now in meeting the needs of everyone living with metastatic disease. Today, the Metastatic Breast Cancer Alliance released its 2014 report, Changing the Landscape for People Living with Metastatic Breast Cancer, a year-long analysis of the latest metastatic breast cancer research, incidence data, available information and services, quality of life, and awareness. Breastcancer.org is one of 29 groups joining together in the Metastatic Breast Cancer Alliance to expand education, awareness, policy, and strategic distribution of research dollars for metastatic disease. You can read our news coverage here, and visit the Metastatic Breast Cancer Alliance to read the full report.

In the meantime, where are we today with metastatic breast cancer treatment options?

“If you look at the last 5 years and you ask, ‘What new drugs have come out for early-stage breast cancer?’ there’s really only one — Perjeta,” says Breastcancer.org Medical Adviser Brian Wojciechowski, M.D. Perjeta is a targeted therapy approved for use before surgery in certain kinds of HER2-positive early-stage disease. “But if you’re looking at metastatic, we’ve seen approvals for Perjeta, Kadcyla, Afinitor, Halaven, and there are other things right around the corner, too. The progress we’ve made in metastatic treatment is just leaps and bounds above the progress we’ve made in early-stage. And now, with this overall survival benefit of 16 months when you add Perjeta to Taxotere and Herceptin — I don’t think we’ve ever seen anything like that in breast cancer treatment.”

Still, what if those treatments don’t apply to your situation or you tried them and they didn’t help you?

Dr. Wojciechowski continues, “If you have metastatic disease and you’ve been through everything else, that is not enough treatment options. Eventually every metastatic patient will run up against that wall. You’re going to see people who’ve had more than five lines of chemo and eventually you get to the point where there is nothing left. No matter how many treatments we have for that patient, it’s one too few.

“We still have a long way to go before we have a cure for every person with breast cancer,” Dr. Wojciechowski says. “But we seem to be in an era where the number of new treatments is rising rapidly, and I think in the next 10 years, we’re going to see some really astonishing results — mostly with targeted therapies. There are the CVK4-6 inhibitors such as palbociclib. There’s neratinib, an experimental tyrosine kinase inhibitor. Triple-negative breast cancer needs targeted therapies. Some being studied for triple-negative are the PARP and VEGF inhibitors, and therapies that target epidermal growth factor (EGFR).”

We often hear metastatic breast cancer being described as more of a chronic condition today than it used to be. Dr. Wojciechowski says, “I don’t really buy that whole narrative, although I know we see legitimate success. The average survival is still 3 years. There is a small percentage of people who will live 9-10 years and sometimes longer. But I don’t think we’re quite there yet where we can compare it to high blood pressure or diabetes.”

If you’re living with metastatic breast cancer, share your experiences below — let us know what’s working and what still needs to be improved.

To learn more about metastatic breast cancer, click here