Editor’s Note: This article is a part of an Op-Ed series, “Second Opinion,” where patient experts share their take on current research, news, and trends in health and medicine. The views expressed in this article do not reflect the opinions or views of HealthCentral.com.
According to the American Cancer Society, about 292,000 women were diagnosed with breast cancer in 2015 — the latest year for which there are statistics. For about 60,000 of those women (20 percent) the diagnosis was ductal carcinoma insitute (DCIS), long known as the “good” breast cancer due to its high survival rate — upwards of 98 to 99 percent, according to breastcancer.org.
DCIS was once considered a sub-type of breast cancer. But in 2013, a working group within the National Cancer Institute suggested doctors stop calling it cancer: unlike other cancers, DCIS isn’t invasive and is unlikely to spread.
Clinical trial aims to reduce over-treatment
Now a newly launched clinical trial — Comparison of Operative to Medical Endocrine Therapy, or COMET — aims to show that simple active surveillance for women with low-risk DCIS can result in an outcome equal to that achieved by aggressive treatment. (Based on the cells’ pathology and other factors, DCIS is divided into three sub-types: low, medium, and high risk). The trial won’t examine simply cancer-related outcomes: i.e., how many women in each arm of the study (current methods of treatment vs. surveillance) develop invasive cancer within two years of diagnosis. It will also assess the participants’ quality of life over those two years, including frequency of pain, anxiety, and depression.
Current DCIS treatment
If you were diagnosed with low-risk DCIS today, understanding that its survival rate is nearly 100 percent, what treatment would you choose? Would you have surgery to remove the atypical cells? Radiation to kill any cells the surgeon’s scalpel missed? Would you choose five years of hormone therapy — the standard recommendation for women with DCIS?
Chances are, you’d opt for aggressive treatment. Your doctor would almost certainly recommend it, and who are you to argue? You might wonder: “If I opt out of treatment, how would I feel if I got blind-sided by a diagnosis of invasive cancer later on?”
The hidden fallout of cancer treatment
As a veteran of invasive breast cancer, I’d like to clue you in on the downside of aggressive treatment. I had a lumpectomy and radiation — the current standard of care for DCIS. I sailed through both of those procedures just fine, with nothing more than transient discomfort. I also did nine years of hormone therapy; it was a bit painful at the time, but didn’t result in any lasting effects. (I also had a mastectomy and chemotherapy, and those left me permanently beaten up; thankfully, those treatments aren’t usually recommended for those with DCIS.) Other women I know didn’t have it so easy. One DCIS survivor friend has a permanently lumpy and discolored breast, thanks to radiation. Another had to stop hormone therapy due to the threat of blood clots. Many went through multiple surgeries in order to get “clear margins” — no sign of cancer in the remaining breast tissue.
In addition, all of my DCIS survivor friends went through the emotional anguish of being told they had cancer. All suffered the fear and anxiety of wondering if their “cancer” would return. The weeks leading up to the annual mammogram were often a nightmare of stress.
In short, there’s nothing easy about cancer treatment, no matter how simple it sounds on paper, or in the doctor’s office. If you’re diagnosed with low-risk DCIS, take it from me: Consider active surveillance rather than surgery, radiation, and hormone therapy. If I was diagnosed with DCIS tomorrow, that’s the route I’d take. What’s more, I’d sign up for the COMET trial. Being part of a clinical trial that might save hundreds of thousands of women in the future from going through devastating cancer treatments? I’m in.
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PJ Hamel is senior digital content editor and food writer at King Arthur Flour, and a James Beard award-winning author. A 16-year breast cancer survivor, her passion is helping women through this devastating disease. She manages a large and active online survivor support network based at her local hospital and shares her wisdom and experience with the greater community via HealthCentral.com.