“You have breast cancer” are probably the four most dreaded words at least 1 in 8 women will hear in their lifetimes.
Some might say the good news is that today many hospitals and clinics have created integrated cancer centers so that within days of delivering this feared diagnosis, appointments are made with a team of medical and radiation oncologists, surgeons, psychologists, and social workers, ready to recommend and begin treatment.
Others, like Donna Pinto and Sandie Walters, say such one stop “rapid response” teams, while well-meaning, often leave patients with little opportunity to consider all possible options including getting second opinions and even opting out of some (or all) of the recommendations. Moreover, the potential risks of current standard treatments tend to be glossed over.
“This is especially true for our diagnosis of ductal carcinoma in situ or DCIS,” say Donna and Sandie in a phone interview yesterday.
Unlike invasive breast cancer, DCIS is a unique category. The term “in situ” refers to the fact that the abnormal cells found in the milk ducts stay there (“in place”) and are said to be incapable of invading outside tissue. However, because physicians are unable to predict which patients with DCIS might go on to develop invasive cancer, the standard of care has been to treat this so-called “stage 0 breast cancer” aggressively.
Michigan resident, Sandie, age 64, and California resident, Donna, age 48 are among the 60,000 women diagnosed with DCIS each year in the United States. Despite their geographic and age differences, they shared similar experiences when given the results of their breast biopsies and treatment options: either lumpectomy plus 7 weeks of daily radiation or mastectomy.
“I felt total fear,” says Sandie who was diagnosed in 2007. “Even though the doctor said DCIS was not life-threatening, the treatment options weren’t all that different from women with invasive breast cancer. In fact, the first surgeon I saw told me to have a double mastectomy right away. He warned against waiting 2 weeks until after my planned vacation. A second surgeon recommended a lumpectomy followed by radiation and said she was comfortable with my taking time to get a second pathology opinion. Dealing with such divergent advice added enormous stress to an already difficult situation.”
Donna reports a sense of total shock when she was diagnosed in 2010. ‘“‘You have DCIS,’ said Susan, the Breast Specialist RN. ‘And although it is considered pre-cancer, we treat it as if it is CANCER.’ Something didn’t feel right – but what choice did I have?”
Neither Sandie nor Donna have a medical background. Sandie is a retired teacher and travel agent, Donna is mom to two boys and works part-time from home as a writing consultant. Nevertheless, armed with the sense that an invasive treatment approach might not be appropriate for their situations, these two women independently set out to educate themselves, spending countless hours reading articles on DCIS and scouring breast cancer support group message boards on the internet.
From the medical articles, each discovered a small group of cancer specialists and researchers beginning to question the need for aggressive therapy for all patients with DCIS. Among them were Los Angeles surgeon Mel Silverstein,MD who had developed the Van Nuys Prognostic Index to determine the risk of recurrence based on a patient’s age as well as size, grade and margins of the DCIS; 30-year DCIS expert and pathologist Michael Lagios, MD who was offering second opinion consultation services, and surgeon Laura Esserman, MD, MBA director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco School of Medicine, who advocated for removing the word “cancer” in DCIS and managing low grade DCIS with active surveillance.
In the internet support groups, Sandie and Donna found endless stories of women sharing their experiences with traditional treatment, but almost none taking Esserman’s “wait and watch” approach. “I felt like a lone ranger bucking the system,” Donna says. “Luckily, while searching the message boards like crazy for someone else out there who was not doing radiation for DCIS, I found a post from Sandie recommending Dr. Lagios. His review of her pathology slides had spared her a mastectomy and radiation.” Donna contacted him as well. “Dr. Lagios offered me new insights and options that were not previously presented by my doctors.”
Ultimately, like Sandie, she opted for a lumpectomy without either radiation or 5 years of hormone therapy.
Since that serendipitous online meeting, the two women have maintained their “virtual” relationship.
Recognizing the value of sharing information and support and the lack of a single website specifically devoted to DCIS, they decided to join forces and spent the last year creating DCIS Redefined ~ Dilemmas, Choices & Integrative Solutions.
The stated mission of this nonprofit organization is “to support and empower women in making informed decisions individualized to their particular DCIS diagnosis”. The stated vision is “for all women to understand the full scope and spectrum of DCIS and to feel supported in their decisions for screening, treating, monitoring, and preventing DCIS recurrence and progression.”
To that end, their new website is extremely well-designed. Each heading has drop-down menus directing the viewer to clear discussions about the current dilemmas, choices (including “active surveillance” when appropriate) and resources (including up-to-date research) unique to DCIS. There is also an opportunity for women to share their individual stories so they don’t feel totally alone.
Beyond the website, Sandie and Donna have ambitious plans for their organization. They hope to create a strong grass roots movement that will not only redefine DCIS (eliminating “carcinoma” from the name itself), but actually refocus current research efforts to understanding this unique entity.
“In the not-too-distant future, I’d love to organize DCIS patient-centered conferences and retreats, bringing together guest speakers such as Dr. Lagios, Dr. Silverstein, Dr. Esserman along with integrative and naturopathic doctors, nutritionists and hormone-balancing specialists,” says Donna. “With 60,000 of us diagnosed each year and an estimated 1 million of us living with it by 2020, it’s time we had a real voice.”
In the meantime, until doctors are able to distinguish between DCIS that needs to be treated and DCIS that can be left alone, DCIS Redefined is the ideal decision aid to help individuals handle the uncertainty.