Living with Advanced Breast Cancer

Elaine Schain, 76, looks forward to changing the floral arrangements at the soup kitchen where she volunteers every Friday. Lissette Montanez, 46, takes pride in making sure children in her Lower Manhattan neighborhood get to and from school safely each day. And Martha Williams, 68, tries to never miss a tai chi class, where she finds energy, spirituality, and a sense of well-being.

In honor of Breast Cancer Awareness Month, Health Matters spoke with these three vibrant New Yorkers who are living with or have faced advanced breast cancer. Each woman is thoroughly engaged with their communities, and grateful to their families, who have helped provide a foundation and support system from which they draw strength. Elaine, Lissette, and Martha are honest about their struggles with cancer but remain steadfast in their determination to lead fulfilling lives — in spite of the difficulties, setbacks, and lingering effects of the disease.

The American Cancer Society estimates that 1 in 8 U.S. women will develop breast cancer in 2018. More than 150,000 women in the U.S. — like Elaine and Lissette — are living with metastatic breast cancer (meaning the cancer has spread to other organs), according to a recent study published in the journal Cancer Epidemiology, Biomarkers & Prevention. The study also had good news, though. Women with metastatic breast cancer are living longer as a result of better treatments.

Here, Elaine, Lissette, and Martha share with us in their own words how their inspiring journeys, unique perspectives, and passion for life go far beyond cancer.

I just celebrated my 76th birthday. Having had cancer for 19 years, I am very happy to have another year. I was diagnosed with breast cancer in my right breast in 1999. It was treated with a lumpectomy, radiation, and medication, and it never came back on that side. Eight years ago, however, I had a different kind of breast cancer in the other breast. It was more aggressive and required a lumpectomy, radiation, and chemotherapy. Two years ago it metastasized to my liver, where it could not be cured, but it could be treated. I am now on my third chemotherapy protocol.

As long as my wonderful medical team, originally headed by Dr. Anne Moore and, since her retirement, by Dr. Tessa Cigler, has a treatment to offer, I will keep going. If it comes to a point where the treatment interferes with my ability to function, I will stop the treatment, whatever will follow. While that may sound pessimistic, I consider myself a realist. I have been functioning well, so I go on. I volunteer at the All Souls soup kitchen on Fridays; I volunteer in a hospital on Tuesdays and I speak to medical students about my experiences. I am out and about! My husband and I go to shows and movies, to museums and parks, and we take long walks to explore Manhattan. We are occupied. I believe staying active and engaged is the most important thing anyone can do.

The soup kitchen is my favorite volunteer activity. We serve nutritious food to 250 to 270 guests in need each week. Each table has an artificial floral arrangement, which I make and change for each season, in addition to serving the food. The people there are gracious and do more for me than I do for them. When you do for others, it takes your mind off your own problems.

I swim and do water aerobics for most of the year. I used to ice skate and ballroom dance, which I can no longer do — not because of the cancer but due to a stroke I suffered in 2008 that has affected my balance.

We go to Florida in the winter. When I am there, I am a regular at the gym, exercising, and where I take a number of classes, including my favorite, Zumba Gold, which is very much like Latin dancing. I love Zumba. I love the rhythm of all Latin music. If I hear it in the street, I stop; it gets me, that kind of music.

I enjoy great support from my family and friends. Married over 54 years to my caring and devoted husband, Howard, we have three married children and seven grandchildren who are my pride and joy.

By and large, I am doing quite well. I have more side effects from the stroke than I do from the cancer. Since I can’t smile with the left side of my face due to the complications from the stroke, I wear a smile pendant so people know that I am still smiling. I have smiled all my life and I won’t stop now.

When my energy returned after cancer treatment earlier this year, I had a desire to do things, to interact with people. I wanted to spend time with my grandchildren and my family, and I knew I wanted to take tai chi.

That’s because, some years ago, I used to go to Bay Ridge in Brooklyn to have my car serviced. While I’d wait, I would watch seniors nearby doing slow, focused movements — what I later learned was tai chi. And I just thought, “That’s so beautiful, I wish I could learn that.”

I started to take classes in July. Wednesday evenings and Friday mornings I’m at tai chi, come what may. After class, I feel like I’m walking 10 feet off the ground. I walk faster, and I have more energy. It’s good for balance and for memory, because you need to remember the movements. It enhances my spiritual well-being, and makes me feel connected to the other people in the room. Our instructor, Sensei Derrick Shareef, tells us to use our peripheral vision to watch everyone else. The class is doing the slow movements in unity, and it makes you feel like you’re bonded spiritually. It’s like singing in a choir — everybody is a part of the whole chorus and all the melodies merge to make beautiful music.

Before I’d found tai chi and started going to Rochdale Village Community Center in Queens for classes, I’d lost my energy to cancer. When I found a lump on my breast in July of 2014, I had already lost two friends and two first cousins to breast cancer, and I decided to seek alternative means of treatment — I had my doubts about traditional therapy. The tumor eventually grew bigger, and I knew I needed to find out what I was dealing with. A friend recommended her primary care physician, Dr. Jeffrey Vieira at NewYork-Presbyterian Brooklyn Methodist Hospital, who I went to see in 2017. He arranged for me to see oncologist Dr. Alan Astrow, who asked me, like other doctors, why I wasn’t doing traditional treatment, and I told him it was because of those I had lost. Though he wanted me to begin treatment, I was not ready, and we agreed I would come back in two months. In the interim, my family was putting pressure on me because I had lost a lot of weight. I had no energy. I would just sit on the couch and turn the TV on. I wasn’t opening mail; I wasn’t functioning. I prayed about it and something told me to go to my appointment, and that I would know what to do after that.

At the appointment, Dr. Astrow said to me, “Ms. Williams, we are going to …” and then he stopped, and he said, “Ms. Williams, what do you want to do?” What doctor does that? I told him I wanted to see a radiologist and have a PET scan. He got on his cellphone and called Dr. Hani Ashamalla, a radiation oncologist, and he agreed to see me that same day. Dr. Astrow’s nurse walked me across the street to Dr. Ashamalla’s office. He examined me on a Thursday and said of the tumor, “This has to come out by Saturday.” Well, that got my attention. I agreed to see a surgeon, Dr. Raffaele Borriello, and he got on his cellphone and they admitted me. I had triple-negative breast cancer, an aggressive type. At that point my cancer had spread to form a mass under my right armpit.

I went through with the surgery in January, and my appetite immediately came back. The nurses were incredible. I never had to ring a buzzer and wonder about where my food or medication was. They were superb. I went through chemotherapy and radiation, and am currently free of disease. I’m also grateful to my plastic surgeon, who did a phenomenal job with my breast reconstruction.

I traveled to my family reunion in Williamsburg, Virginia, this year, and to my cousin’s 30th anniversary celebration, where he and his wife recommitted to their vows. I visited friends in North Carolina. I love to travel nationally and internationally, and intend to plan some trips going forward.

I believe that there is more God has in store for me to do, that he is not ready to call me yet. I am trying very hard to live life as fully as I can as a tribute to my friends and relatives who were trying to do the same thing, who wanted very much to survive, and didn’t. So I talk to them all the time and say, “This is for us.”

I started work as a crossing guard in September 2017. I enjoy everything about this job — the people, being in the community, and especially the children. They put a smile on my face. They’re really special to me. I work in Lower Manhattan, where I grew up, so I’m comfortable here. When tourists ask for directions, I can help them out. I’ve built friendships doing my crossing guard duties too.

I chose to be a crossing guard because I was looking for a purpose. I was diagnosed with stage 3 breast cancer in 2008, back when I was living in Florida. I immediately started intravenous chemotherapy and had a lumpectomy to remove the tumor in my left breast. Then I did radiation, and, according to the doctors, I was in remission. In October 2015, after I’d moved back to New York, I discovered my breast cancer had returned, and it was now stage 4 and metastatic. It had spread to other areas of my body, my bones in particular. They started treating me right away. I currently take medication and oral chemotherapy, as well as chemotherapy and hormone injections.

I have the foundation of a very strong family, and that is the reason I’ve had courage in facing my illnesses. My mother, who unfortunately is no longer with us, faced a lot and had remarkable courage; she was who I always wanted to be. I wanted to learn from her strength, and I’d like to think I’ve made my mother proud. Sometimes I amaze myself and think, “Wow, I am Mom.” It helps, too, that I have a wonderful medical team at NewYork-Presbyterian — my oncologist Dr. Ok-Kyong Chaekal is amazing, and the entire team is incredible.

Like any illness, it sucks. But it is what it is. All I can do is my treatment, and pray for the best. It’s difficult, especially on days when I am immobile due to treatment and have to stay in bed, or when other illnesses come, like a cold. I’m used to being an active person, so when I’m knocked on my rear, I feel useless, and I start doubting myself. But then I think about my family, and I get myself out of that funk. When I get down and depressed, I think of my family, and I force myself out of bed and jump in the shower. I cry for a little bit, and once I come back out, I might still be a little depressed, but maybe not as much as before. I get dressed and tell my boyfriend, “Come on, let’s go for a walk,” and then we’ll go out, even if it’s just for 10 minutes to sit in the park and do nothing.

My boyfriend got me into fishing. We’ve been sharing different new experiences, and it’s been great. Once in a while we go out to Long Island, but we usually go to Canarsie Pier or Floyd Bennett Field in Brooklyn. It’s peaceful and quiet and nobody bothers you. You forget about everything, even if it’s just for a few hours.

I like people to hear my story. And if they can get anything out of it, even if it’s just a little bit of courage, I feel like my place here on Earth has had its purpose.

Learn more about cancer treatment at NewYork-Presbyterian.