Amy Berman: Living Well with Terminal Breast Cancer

When Amy Berman was diagnosed with Stage IV inflammatory breast cancer in October 2010, she knew she had the worst possible prognosis. Inflammatory breast cancer has no cure. When diagnosed at this fourth and final stage, the cancer’s spread is well established, leading to five-year survival rates of only 20 per cent.

Ms. Berman was clear from the outset that she wanted to focus what time she had left on quality of life and maintaining her function. She takes medication to slow the progress of her cancer and receives treatment for her symptoms, but she has rejected other treatment options of chemotherapy, radiation and mastectomy.

“For me, the goal was to feel well for as long as possible, not to eke out more bad days,” says Ms. Berman. “I chose not to do the kinds of treatment that would deplete me now because they wouldn’t have a benefit in the end.”

In the two and a half years since her diagnosis, Ms. Berman, a registered nurse and senior program officer at the John A. Hartford Foundation in New York, has become one of the country’s most inspirational advocates in the field of palliative care. In April, she delivered the annual Douglas West Endowed Memorial Lecture in Geriatrics and Palliative Care at Mount Sinai.

Palliative care is a relatively new medical specialty focused on relieving the symptoms, pain and stress of a serious illness for patients and their families. It provides an added layer of support for patients of all ages and at all stages of any serious or advanced illness, whatever the prognosis. The keystone of this care is the communication and coordination of treatment options to maximize quality of life for patients, according to the individual patient’s goals and aspirations.

“Palliative care is about life. You get to participate in framing your care to have the life that you want. That’s a gift and I am a living example of it,” says Ms. Berman. “With surgery and chemotherapy, I would have had two and half bad years and healthcare would have spent a lot more money. I’m actually getting better care, better health, at lower cost, and it’s the care that I want.”

Although Ms. Berman had already found an oncologist who supported her goals of care, in the days after her diagnosis she sought out a prominent national cancer expert to get a second opinion. This type of breast cancer is rare and not well understood, and Ms. Berman wanted to be sure that she was not missing any new treatment in the pipeline that could improve her outlook.

This second doctor performed a cursory examination, asked nothing about what she wanted from treatment, and then recommended aggressive chemotherapy, a mastectomy, then radiation and more chemotherapy – a treatment protocol he told Ms. Berman he uses for “all my patients”.

This regimen would have meant months of chemotherapy-induced nausea and vomiting, postoperative pain, extreme fatigue, hair loss, bone aches, intestinal problems and radiation burns – all with little or no guarantee that any of this physical suffering would extend her life. Indeed, some studies suggest that patients who opt for a more palliative approach may actually live longer. Ms. Berman declined the treatment.

“I think one of the difficulties in healthcare is that we train people to fight a disease, and we don’t train people to support the health of the person. With this kind of framework, the person can almost get in the way,” says Ms. Berman.

Ms. Berman’s choices are the exception, however. She explains that many patients don’t understand they may have options, often believing that the only way to respond to disease is to fight with every treatment at their disposal, even though their body is the battleground. Meanwhile, palliative care is often wrongly equated with end of life care, making patients reluctant to consider it.

“In fact, palliative care has nothing to do with end of life other than the fact that it exists at the end of life,” says Ms. Berman. “Palliative care is at cure, it’s at chronic disease, and it’s also at the end of life. That’s something that consumers don’t know, and they should understand that they can ask for it at any stage of their disease.”

The Douglas West Memorial Lecture was endowed by Susie West in memory of her late husband and in honor of Dr. Diane Meier, who cared for him in his final years. The lecture is now in its 17th year. Previous speakers have included notable healthcare professionals such as Dr. Christine Cassel, Dame Cecily Saunders, and Dr. Siddhartha Mukherjee, and authors and journalists such as Anna Quindlen and Gail Sheehy.