Stacy Goldsby, 49, of Burlingame, Calif., was told by her doctor that she had breast cancer after a lump was discovered in her breast during a routine mammogram in August 2012. It was not until she received her biopsy results and sought a second opinion that Stacy discovered she had a noninvasive form called ductal carcinoma in situ, commonly referred to as DCIS.
“I felt displaced and confused at first because I didn’t know what it was,” Stacy says. “I had to reread everything, including one book in particular that had a full chapter on DCIS. I had read everything but that chapter.”
Diagnosing Noninvasive Breast Cancer
According to the American Cancer Society, about 60,000 women were diagnosed with noninvasive breast cancer in 2011. About 85 percent of these cases were DCIS, a stage 0 cancer in which abnormal cells are found in the lining of milk ducts. Unlike invasive disease, the cancer in DCIS has not broken through the walls of the milk ducts to surrounding healthy breast tissue. DCIS is considered stage 0 because it is “in situ,” meaning the cancer remains in the spot where it began.
Although it is not life-threatening, DCIS that is inadequately treated can progress to invasive breast cancer. Having DCIS can also increase your risk of developing invasive breast cancer later in life. If DCIS is found in addition to an invasive breast cancer diagnosis, you will be treated based on the stage of the invasive cancer.
David Euhus, MD, professor of surgery in the division of surgical oncology at U.T. Southwestern Medical Center at Dallas, says more than 80 percent of women diagnosed with invasive breast cancer have DCIS as part of their diagnosis. “DCIS is never invasive, but it can be associated with invasive cancer,” he says.
DCIS is different from lobular carcinoma in situ (LCIS), abnormal cell growth that does not spread beyond the breast’s milk-producing glands, or lobules. LCIS is much less common than DCIS. According to the American Cancer Society, it accounted for about 11 percent of in situ diagnoses from 2004-2008. Although LCIS is not considered cancer, having it increases your risk of developing invasive breast cancer in the future.
If you are diagnosed with LCIS after a needle biopsy, your doctor may recommend an open surgical biopsy to make sure DCIS or invasive cancer are not also present. LCIS is not an immediate threat to your health. You and your doctor might have follow-up visits every six to 12 months to watch for any signs of invasive breast cancer. Your doctor might also advise that you make lifestyle changes, take medicines or undergo preventive surgery to reduce your risk of developing breast cancer.
The Overtreatment Debate
Dr. Euhus says that mammography has become so common that doctors are seeing a significant increase in the number of women diagnosed with DCIS.
“We do this screening because we want to catch these more aggressive cancers when they are very early so we can interrupt their natural history and stop them from becoming fatal,” Dr. Euhus says. “The downside is that [screening] picks up cancers that aren’t life-threatening.”
Peggy Orenstein recently addressed this issue in her article, “Our Feel-Good War on Cancer,” published in The New York Times Magazine on April 25. Because there are no available tests to differentiate DCIS that will not progress from those that could develop invasive breast cancer, some women may undergo treatment they might not need.
Dr. Euhus says there is a lot of overlap between treatment for DCIS and invasive breast cancer. “Just like invasive breast cancer, you have the option of breast conservation, which is a lumpectomy to remove the DCIS with a margin of normal tissue around it, followed by radiation,” he says. “Or you can have a mastectomy, removing the entire breast, and not have radiation.”
A lumpectomy with radiation is usually recommended when DCIS only appears in one area of the breast and can be removed along with a clear margin of healthy tissue.
Doctors may recommend a mastectomy if the DCIS covers a large area, or if there is more than one area of DCIS in the breast. If you receive a lumpectomy, you may choose to forgo radiation if you have a very small, low grade DCIS and feel the side effects outweigh the benefits. A new molecular test called Oncotype DX maybe able to identify DCIS with such a low recurrence risk that radiation may not be necessary after lumpectomy.
After surgery and radiation, you may receive hormonal therapy, like tamoxifen, if the DCIS is hormone receptor-positive.
Lumpectomy plus radiation reduces the risk of recurrence between 15 and 30 percent in DCIS. Studies suggest that radiation followed by tamoxifen after surgery reduces risk of recurrence in hormone-sensitive breast cancers by half within five years. Dr. Euhus says the risk of recurrence after mastectomy is about 2 percent.
After she was diagnosed with DCIS in August 2008 at age 54, Susan O’Neill, of Orlando, Fla., received a lumpectomy followed by radiation. Since the DCIS was ER positive, her doctor recommended tamoxifen to lower the risk of recurrence, which she turned down.
“It came down to the fact that it wasn’t mandatory, so I choose not to take tamoxifen, especially given the side effects,” she says. “I have been very diligent in my follow-up care, and I’m still cancer free, so I feel I made the best decision for myself.”
Stacy opted to undergo a double mastectomy. Her mother died of metastatic breast cancer in 1984, when Stacy was 20 years old. Given her family history, this treatment decision made her the most comfortable.
“My mother was 44 when she was diagnosed, and the breast cancer hit her like a tsunami—it took her out hard and furious,” Stacy says. “To honor her legacy and life as her daughter, I had to make bold decisions.”
If you have been diagnosed with DCIS, you may feel confused or frustrated. Even though it is not considered life—threatening, you still experience the same treatments and side effects as women with invasive breast cancer—including surgeries that change or disfigure the breast, reconstruction, radiation and hormonal therapies—without really knowing whether you needed them.
When Janet Glover-Kerkvliet, 50, of Baltimore, Md., learned she had DCIS, she felt conflicting emotions.
“I had something on the breast cancer scale and it was scary, but there was this sense in my own mind that somehow it was less, or not as bad, or not as important. Then there was the question, ‘Do you really call this cancer?’” Janet recalls.
Stacy asked herself the same question. In late 2012, Stacy and another woman diagnosed with DCIS attended a breast cancer support group. After the woman introduced herself, another group member said within earshot, “DCIS? Oh, I wish I had that,” causing the woman to get up and leave.
“I was shocked,” Stacy says. “That moment made me feel like there was not a real sense of identity—where do I fit in with this group? I didn’t quite know, and in a way the incident made me feel like I did not have ‘enough’ cancer.”
Because there was no history of cancer in her family, Susan was nervous because she didn’t know what to expect. She joined a breast cancer support group to alleviate her anxiety.
Susan learned a lot from group members and meetings, but because most of her peers had invasive breast cancer and had much more extensive treatment, she developed feelings similar to Stacy’s.
“It’s a personal challenge for someone with DCIS—sometimes you didn’t feel worthy to be part of the group because [others] seemed to suffer so much more than what you did,” Susan says.
In addition to the isolation or impact of treatment, fear of recurrence or of developing an invasive breast cancer can also take an emotional toll.
Susan tries to put her fears at ease by reminding herself of the lifestyle changes she made to reduce her risk and the careful screening schedule she and her doctor created. Her follow-up care included a mammogram and MRI every six months for the first three years after treatment. Now she receives just a mammogram every six months.
Stacy will see her doctor for her first-year follow-up appointment this August. “I feel more confident from the changes I’ve made for my health and with my follow-up care,” Stacy says.
Janet has routine screenings and works on improving her health with exercise, maintaining a healthy weight, lowering stress and eliminating caffeine. She deals with fears of recurrence through therapy, her faith and building a support network of family and friends.
“DCIS is not trivial,” Janet says. “It does affect your life, even if it’s stage 0.”
Researchers are working to discover a way to predict risk of DCIS recurrence or progression. Until then, many women may choose more treatment rather than risk DCIS recurrence or invasive breast cancer.
Stacy says she never wanted to look back and wish she had done more, especially after watching what her mother went through.
“I know a lot of people questioned my boldness, and I know that a mastectomy doesn’t eliminate the risk of recurrence,” she says. “It was for my comfort and my peace. I needed to know that I did everything I could to reduce my risk.”