Dancing In Limbo: Living with Metastatic Breast Cancer

Three women share the uncertainty of living with metastatic breast cancer.


Talk about this article with other patients, caregivers, and advocates in the Breast CURE discussion group.
Lilla Romeo invites her guests to gather around the dining room table of her elegant 11th floor New York City apartment where the lights of the city at night shine through two glass walls. As her guests settle in, Romeo, 61, points to a room monitor and says that, should they hear baby sounds, it’s her 2-year-old granddaughter asleep in a bedroom down the hall.

Lilla Romeo

Lilla Romeo, Ellen Hoffman, and Susan Langley have been living with metastatic breast cancer for eight, four, and one year, respectively.

Romeo, who was initially diagnosed at age 48 in 1995 while living in London, had a lumpectomy and radiation followed by five years of tamoxifen, a type of hormonal therapy. Her cancer returned in the same breast in 2000. Back in New York City by then, she had a mastectomy and began chemotherapy for the recurrence, now stage 3 breast cancer.

Three days before Romeo’s last chemotherapy session, a rash appeared on her mastectomy incision—a biopsy showed it was metastasis to the skin. With the cancer moving to another organ, Romeo’s cancer was stage 4. Further scans showed no other metastatic sites. A tiny spot on a lung was not thought to be cancer.

A lot had changed since her first diagnosis in 1995, so doctors tested her tumor and found it was positive for HER2, a gene present in normal breast cells that is overly abundant in some malignant cells, which meant a new biologically targeted drug called Herceptin (trastuzumab) could be used. Romeo’s initial tumor was estrogen receptor-positive (hormone-sensitive), but as sometimes happens, the stage 4 cancer was estrogen receptor-negative, a change that meant the tumor would not respond to hormonal treatment.

For five years, Romeo received Herceptin with the chemotherapy drug Navelbine (vinorelbine), both administered intravenously. With few side effects, she traveled to England, where she also holds citizenship, and Italy, where she was born. She received treatment at hospitals abroad and lived a full life, going to the gym, celebrating at children’s weddings, volunteering on a hotline for breast cancer patients, and becoming an activist for women with metastatic breast cancer. The treatment was working and the cancer on her chest was barely visible.

In 2005, Romeo says her oncologist felt her body needed a “chemo vacation,” so he took her off Navelbine (she continued taking Herceptin). For eight months, the rash remained stable; then it returned with what Romeo calls “a vengeance.” The Herceptin plus Navelbine combo worked again until February 2007, when the lung lesion, initially thought to be nothing, lit up on her scans, indicating the cancer had spread to her lung. Next, Romeo endured a nine-month roller coaster of drugs from the arsenal that has become available in the past 15 years.

Her oncologist tried three different drug combinations, and with each new cocktail, Romeo waited three months before scans showed if it was working. In the meantime, Romeo walked the all-too-familiar tightrope of waiting, watching, and hoping while the cancer grew and the list of possible drugs shrank.

On the night we gather Romeo has just learned that Abraxane (paclitaxel reformulation), the fourth option used by her oncologist, is working. Scans show dramatic improvement and nearly complete resolution in some areas. She has received a reprieve.

When Romeo begins ticking off the drugs her oncologist tried, there is a tense silence in the room as both Hoffman and Langley listen intently to what they know could very well be their future.

Ellen Hoffman

It had been 22 years since her initial diagnosis when Hoffman was diagnosed with a recurrence in 2005. For the artist and retired educator, it was a bone scan that showed multiple lesions throughout her body.

Hoffman’s tumor was estrogen receptor-positive and she began hormonal treatment with Femara (letrozole) for six months before beginning a trial of Femara and Avastin (bevacizumab) for six months. Then it was tamoxifen followed by Aromasin (exemestane). She has now been on oral Xeloda (capecitabine) since July 2007, and her disease is stable. She also sees an orthopedist, who monitors lesions in her hips, pelvis, and femur to be sure she is not in danger of fractures and to determine if she needs further radiation.

Shortly after the recurrence was discovered, Hoffman retired with disability from her teaching and staff development position, a move she says measurably reduced her stress. She remains active as an artist, creating new work and exhibiting her large-scale drawings while also serving as treasurer in an artists’ collaborative.

Susan Langley

After her stage 2 breast cancer diagnosis in 1998, Langley received Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), and Taxol (paclitaxel).

In December 2006, Langley, now retired from CBS News Corporate and Records, experienced excruciating pain in her upper right arm. After an X-ray showed the bone was broken, further scans revealed the breast cancer had spread to the bones in the left shoulder and right hip. (Bone metastasis increases the risk of fracture.) Because her cancer was estrogen receptorpositive, she began the oral hormonal drug Aromasin with monthly intravenous injections of Zometa (zoledronic acid) to protect her bones.

Talk about this article with other patients, caregivers, and advocates in the Breast CURE discussion group.
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