From DCIS diagnosis and treatment decision to the diligent monitoring ahead

I assumed it was another false alarm.

Just minutes after enduring my very first mammogram at the age of 39, a little earlier than is typically recommended because of prior cysts, the technician left and returned with a doctor.

“We found an irregularity we need to biopsy.”

Weeks later, I called my OB/GYN for the results, still blithely assuming this would be another harmless cyst and a recommendation to cut back on the caffeine (not happening).

All it took was a pause. The briefest pause when I asked her for the results. Maybe one second? Two, tops? I suddenly felt awake.

“Your results showed a malignancy – it’s called DCIS. There were a few spots.”

Thus 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. In my life, I’ve agonized over choosing the right granite for counters, interior colors on a car, highlights or lowlights.

I never expected to have so much choice – lumpectomy, mastectomy, or double mastectomy – when faced with my own treatment for ductal carcinoma in situ, a cancer I could barely call cancer. A pre-cancer cancer.

I researched every observational study, clinical trial or brief I could find on the topic of DCIS, which is the most common form of early-stage breast cancer and affects 60,000 women a year – many of whom, like me, have no outward symptoms.

We know about 20 to 30% of DCIS cases will become invasive, but researchers don’t know exactly which tumors will “break through” the milk ducts that contain them.

But that’s changing, thanks to researchers at MD Anderson who discovered a direct genomic lineage between DCIS and a form of breast cancer called invasive ductal carcinoma (IDC). Simply put, someday we will know which premalignant tumors are essentially harmless and which require aggressive treatment.

For now, the goal of DCIS treatment is to reduce the patient’s odds of developing an invasive form of breast cancer. I was referred to an oncologist, breast surgeon and radiation oncologist who appraised the prognostic factors of my DCIS, such as tumor size, and nuclear grade, which can help predict the chance of recurrence. Together, those findings guided us to a thoughtful, data-driven treatment plan – but ultimately, the big decision of whether to have a lumpectomy, mastectomy, or bilateral prophylactic mastectomy was mine alone.

As I awaited the surgery date, thoughts vacillated from “just do the lumpectomy, there’s no reason to perform radical surgery for a cancer that’s not really cancer” to “why would you take the chance on this coming back? Do the bilateral mastectomy and have total peace of mind.” I didn’t have to decide until the week before, and this was a decision only I could make.

I met with a plastic surgeon to learn about reconstruction options, risks, and the recovery process. I underwent genetic testing to rule out HER2 or BRCA mutations. I spent hours sifting through patient forums, and would fall asleep Googling recurrence rates of DCIS based on multiple factors, including my age.

In the end, I chose a lumpectomy rather than mastectomy because of the tumor’s small size and my confidence in regular screenings under the care of excellent physicians at MD Anderson. Because of the tumor’s intermediate nuclear grade, my radiation oncologist recommended 4-5 weeks of radiation and optional adjuvant hormone therapy if I wished to further decrease my already low chance of recurrence.

The surgery, in March 2017, went smoothly and I began radiation the following month. I remember very little about the hours and days immediately following surgery, but I’ll never forget the women I met during radiation treatment at MD Anderson’s Radiation Oncology Center.

“It’s absolutely striking how many women are impacted by this disease – women of all ages and ethnicities,” one woman said. “Honestly, we all just need a hug.”

One day, there were just four of us, including a woman from Louisiana whose hometown doctors had overlooked the most effective treatment plan for her triple-negative breast cancer.

“After my diagnosis, I would tuck my 11-year-old daughter in bed at night, and then listen to her pray. She asked, ‘God, please don’t let my mom die,’” she said. “If I hadn’t come to Houston, I’d be dead.”

When I left my final radiation session and rang the bell, joined by my husband and the radiation therapists who for weeks brought me warm blankets and helped position me comfortably under the industrial blare of equipment, I realized this isn’t the end of my journey. And that’s OK.

I will continue with the screenings that have saved millions of women’s lives and caught cancers – both aggressive or non-invasive – early enough to allow thoughtful discourse among doctors and their patients.