THE BLOG
01/28/2015 10:45 am ET Updated Mar 30, 2015

Quantity and Quality of Life: Addressing Gaps in Services for Those Living With Metastatic Breast Cancer

Living with metastatic breast cancer is a daily challenge. Each day you wake up, you don't know what side effects you're going to face. You wonder if you're going to have enough energy to make it out of bed, let alone through the day. You might be anxious about your next set of scans or struggling to select which drug to try when your current treatment stops working -- attempting to balance the potential for the drug to control your cancer with toxicities and debilitating side effects.

Unlike early breast cancer, where you can complete your treatment and the doctor says, "Come back in a year," metastatic disease is a part of your life 365 days a year, every day until your last day. So what better time to talk about it and how we can help metastatic patients than the start of a new year.

To do this, we must first look at the general public's understanding of metastatic breast cancer and our understanding of the struggles metastatic patients face.

The vast majority of breast cancer efforts have focused on awareness and the importance of screening and early detection -- efforts that have undoubtedly saved lives. However, the general public is far less familiar with metastatic breast cancer, also known as Stage IV, which affects up to 250,000 women and men in the U.S. Although that's a sizable number, a recent Pfizer survey found that 60 percent of respondents knew "little to nothing" about metastatic disease. There's clearly an awareness problem.

Metastatic breast cancer occurs when cancer cells have spread from the breast to other parts of the body, including vital organs such as the liver, lungs, brain and bones. You don't die from a breast cancer sitting in your breast. Nearly all people who succumb to breast cancer die from the metastatic kind. Nearly three in 10 women who have had early breast cancer will eventually develop metastatic disease. There are no cures currently available, and continuous treatment is needed to control the spread of the disease and its symptoms. The median survival rate is three years.

End-stage breast cancer patients have unique quality-of-life issues, which were examined in a 2014 analysis Changing the Landscape for Those Living with Metastatic Breast Cancer published by the Metastatic Breast Cancer Alliance. The Alliance is comprised of 29 member organizations, including the Avon Foundation for Women and Susan G. Komen. The alliance's report notes that patients experience a host of psychosocial issues, including depression and anxiety. Many face a social stigma, feeling ostracized in breast cancer support groups, which tend to be populated with early-stage patients. Why the alienation? Women with early-stage breast cancer don't want to think they could one day face metastatic disease.

Another seemingly paradoxical stigma associated with metastatic breast cancer is that some patients appear too healthy. They can still work, parent their kids and maintain much of their pre-diagnosis lives, at least for a period of time. All appears status quo. And that's not the face of an incurable disease. So friends and family may become suspicious. I know one patient who is years into battling her metastatic disease. Because she is on targeted therapies, and not chemotherapy, her outward appearance is similar to before her diagnosis. The drugs that target her type of metastatic breast cancer don't make her lose her hair, don't make her nauseated. So even after all this time, her own family members are still questioning her disease -- yet another stress.

The side effects and symptoms of metastatic breast cancer vary depending upon to what other parts of the body the cancer has spread. Women with metastasis to the bone can experience incredible pain. Most patients can face fatigue and difficulties sleeping. A patient struggling with physical and the earlier-mentioned psychosocial issues may also be burdened with financial hardship as a result of the disease. The cost of care -- usually numerous combinations of drugs, multiple surgeries, PET scans and other imaging tests -- can add up. Some patients must literally choose between buying the medicines that are keeping them alive and buying groceries. One study found that cancer patients were 2.65 times more likely to file for bankruptcy than people without cancer.

Many metastatic breast cancer patients and their families, particularly those in underserved populations, need our help. The Avon Foundation and Pfizer have just announced the 23 recipient organizations of $1 million in grant funding. That money will be used to address gaps in services for the metastatic breast cancer community, including medical, psychological and nutritional support, complementary and integrative services (including acupuncture and meditation to help with pain and anxiety), financial and legal support.

These grants will help connect patients to medicines for those who can't afford them. They'll link women in underserved communities with nutritious food, treatment options, integrative medicine and complementary treatments. And the money will be used to help educate the public about metastatic breast cancer. We must lower that 60 percent rate of people knowing "little to nothing" about the disease.

Metastatic breast cancer patients realize they don't have many months or years left. But they want as many as they can get and are fighting for their lives to be able to see a child graduate, go to college, get married. For these patients, it's a matter of surviving as long as possible, with as high a quality of life as possible. It's quantity of life but also quality of life. And we can all help with both.