Ligia Toro de Stefani, Ph.D., had just retired from a busy academic medical research career when a mammogram revealed a suspicious mass in her right breast. Her doctors in Brownsville, Texas, referred her to MD Anderson, where she was diagnosed with ductal carcinoma in situ, or DCIS, often called “stage 0” breast cancer – the very earliest stage.
Toro and her husband, Enrico Stefani, M.D., Ph.D., researched everything they could about the condition before meeting with MD Anderson surgeon Alastair Thompson, M.D., to discuss treatment options.
Investigating came naturally to the scientific couple. Toro is an emeritus professor of anesthesiology and molecular and medical pharmacology at the University of California, Los Angeles. Her husband is a former director of UCLA’s anesthesiology division of molecular medicine.
“We started reading a lot of papers, not just Googling the disease, but doing a serious literature search,” Toro de Stefani says.
DCIS is a cluster of cancer cells inside a milk duct. The cells are held in place by the duct’s wall, but they have the ability to break through the wall. That’s when they become invasive.
“That won’t happen to everyone,” Toro de Stefani says, “but there’s no predicting when cells will break through the duct and spread, and when they won’t.”
Studies show that about 75% of DCIS cases may never become invasive breast cancer.
Still, current guidelines for DCIS often recommend surgery, usually lumpectomy followed by radiation, to remove suspicious lesions.
“I didn’t relish the thought of having surgery at my age,” Toro de Stefani says, “especially since my doctor determined that I was at low risk for developing invasive cancer.”
She decided to forego surgery and instead opted for active surveillance.
Now, Toro de Stefani returns to MD Anderson every six months for a routine mammogram to see if the abnormal cells have spread, and takes a daily hormone therapy pill to keep any growth in check. And she eats a low-carb diet and exercises to stay at a healthy weight and lower her cancer risk. A year has passed since her initial diagnosis, without any change.
“I just live a normal life without having to have surgery,” she says. “The only inconvenience is having a mammogram every six months, then waiting for the results to see if they’re the same or not.”
Difficult decisions for patients
Toro de Stefani is one of 60,000 U.S. women diagnosed with DCIS each year. Each must decide on a treatment option.
Current guidelines that recommend lumpectomy and radiation are causing concerns that the condition may be overtreated, since most cases never become invasive.
“This gives medical professionals enormous uncertainty about how to advise women on an individual basis,” says Thompson, professor of Surgery at MD Anderson. “And therefore, historically the treatments have ranged from active surveillance on one end of the pectrum all the way to mastectomies on the other.”
Thompson says DCIS diagnoses have increased as breast imaging has become more accurate and frequent. The National Institutes of Health estimates that by 2020, more than 1 million women in the U.S. will be living with a DCIS diagnosis, compared to 500,000 in 2005.
Before mammograms became common, many women had the condition for years without being aware of it, because it grows so slowly and causes no symptoms.
“Perhaps, surprisingly, given that breast screening has been around for three or four decades, we’re only now really coming to grips with the fact that we often diagnose some conditions like DCIS as breast cancer even though they’re not conventional, invasive breast cancers,” Thompson says.
He’s participating in three DCIS research studies that he hopes will make treatment decisions easier.
Surgery or wait-and-see
Thompson is a co-principal investigator of the COMET, or Comparing Operative to Monitoring and Endocrine Therapy for low-risk DCIS, clinical trial.
The trial compares invasive surgery – with or without radiation – to active surveillance where patients have a mammogram every six months for five years, without active treatment. All study participants may also opt for hormone therapy, which is usually a pill a day for five years. MD Anderson is one of 100 participating sites nationwide.
Joyce Crawford, 69, a retired correctional officer from Point Blank, Texas, was the first patient to enroll in the COMET trial at MD Anderson.
Last fall, a screening mammogram showed abnormal-looking cells in her left breast that “looked like little grains of salt.” At her doctor’s recommendation, Crawford sought treatment at MD Anderson and was given the option to enroll in the COMET trial or to pursue standard care, which might include surgery.
Crawford carefully considered the risks and weighed her options.
She loved to fish, go to the beach and care for her four grandchildren, ages 3 to 13. She hoped to avoid surgery and stay active.
After “listening to her heart,” she enrolled in the active surveillance arm of the study. She takes a daily hormone pill and returns to MD Anderson for mammograms every six months. Crawford says she prefers a wait-and-see approach over surgery, even if it involves some uncertainty.
“I’m not worried about it. I’m happy I did what I did,” she says. “The mammograms will show whether I need to do anything else or not. I check myself, and I’ve never felt a lump.”
Thompson also is co-principal investigator for the PRECISION, or PREvent ductal Carcinoma In Situ Invasive Overtreatment Now study. The multi-institutional effort aims to learn more about why DCIS turns into invasive breast cancer in some women but not in others. The goal is to prevent overtreatment of DCIS patients who were never at risk for invasive breast cancer.
After nearly three decades of treating DCIS patients, Thompson feels optimistic about what the future holds.
“We’re getting to the stage where we can actually have a chance for nailing stage 0 cancer in terms of understanding it and better individualizing the treatment if treatment is needed.”
What is ductal carcinoma in situ (DCIS)?
According to the American Cancer Society, DCIS is non-invasive or pre-invasive breast cancer, which means the cells that line the ducts have changed to cancer cells but haven’t spread through the walls of the ducts into the nearby breast tissue.
DCIS is considered a pre-cancer because sometimes it can become an invasive cancer. This means that over time, DCIS may spread out of the ducts into nearby tissue, and could metastasize. Currently, there’s no good way to predict which will become invasive cancer and which won’t. Therefore, almost all women with DCIS will be treated.
In most cases, a woman with DCIS can choose between breast-conserving surgery (BCS) and simple mastectomy. In cases where the area of DCIS is very large, the breast has several areas of DCIS, or BCS cannot remove the DCIS completely, mastectomy might be a better option.
When Helen Spencer learned she had DCIS, she began a “journey of decisions ranging from which hospital to choose, to the type of surgery, to whether adjuvant hormone therapy would be worth the potential side effects.” Read her story.