Diagnosed with DCIS? Here's What You Need to Know Right Now

Patient Expert

Your doctor's just said those awful words: "You have breast cancer." S/he says it's DCIS. But according to a National Cancer Institute task force report, you actually don't have cancer. How do you make sense of this - and what do you do next?

Exactly what is DCIS, anyway?
DCIS - ductal carcinoma in situ - is a condition marked by an overgrowth of cells in the breast's milk ducts, the tiny tubes that bring milk from where it's manufactured (in the lobules) to your nipple.

This overgrowth has remained confined to the ducts; the cells haven't developed the ability to invade surrounding tissue. And, since the ability to spread beyond point of origin is the hallmark of cancer, DCIS can't truly be called cancer.

So why did my doctor say it's breast cancer?
Until a couple of years ago, DCIS was routinely called non-invasive cancer, or pre-cancer, or sometimes stage 0 cancer. But a 2013 National Cancer Institute task force recommended that DCIS, since it's not truly cancer, be declassified.

According to the task force's report, ""[DCIS] should not be labeled as cancer or neoplasia, nor should the word 'cancer' be in the name." (Esserman) The task force suggests naming DCIS and other benign cancers "IDLE (indolent lesions of epithelial origin)."

Why did your doctor say you have cancer? Chances are s/he simply hasn't caught up with (or bought into) this NCI recommendation; old habits die hard.

Is DCIS at all dangerous, then? Do I have to worry?
With treatment, the cure rate for DCIS is about 99%. In addition, a significant majority of DCIS cases, even if left completely untreated, would never develop into invasive cancer.

DCIS does increase your risk of developing invasive cancer (either at the site of the abnormal cells, or in your other breast) to about 14% over the six years following diagnosis. This is a slight increase over your lifetime risk of 12%.

But should I have surgery, or what? What's the best treatment?
The "best" treatment is what works for you, and for your physical and emotional well-being.

In the past, women were routinely treated for DCIS with a combination of surgery followed by radiation to eliminate the cells, then 5 years or more of hormone therapy, to make sure they didn't recur.

Current research shows that in many (perhaps most) cases this qualifies as over-treatment, since those abnormal cells were never destined to become cancerous. The challenge is, researchers can't yet identify which DCIS cells might become invasive, and which will remain benign forever. So you're faced with a potentially tough decision: how confident do I feel that I'll be in the majority of cases where this DCIS never becomes a problem?

Some women decide surgery, with its inherent risk; and radiation and hormone therapy (HT), with their side effects (sometimes short-term, sometimes lasting, sometimes even fatal) are worth undertaking.

Some women opt for surgery, but skip radiation and HT. Some choose HT alone; and some opt to do nothing beyond "watchful waiting" - regular screening to make sure their DCIS hasn't changed.

What's the best course for you? Whatever you feel you can support with confidence - no worry, no guilt, no second-guessing.

My advice? Don't panic; and don't let your doctor rush you into a quick decision. Take the time to formulate a solid plan, one based on both external data, and your own internal assessment.

Stop: DCIS isn't going to kill you right now, and probably never will. This isn't an emergency situation: you have time to think.

Look: There's lots of research out there around DCIS, including the sources below. Read; absorb; consider.

Listen: In the end, this is your decision. Listen to your mind, AND your heart. Maybe watchful waiting is your best course. Maybe you want a double mastectomy. Whatever course you choose, it's the right one for YOU.

Sources

Esserman, L. (2013, July 29). Overdiagnosis and overtreatment in cancer: an opportunity for improvement. Retrieved from http://jama.jamanetwork.com/article.aspx?articleid=1722196

Hamel, P. (2011, September 22). Non-Surgical Breast Cancer Treatment: Avoiding the Knife. Retrieved February 28, 2015, from http://www.healthcentral.com/breast-cancer/c/78/144485/treatment/

Hamel, P. (2013, August 27). Redefining Breast Cancer: NCI Task Force Seeks to Reduce Overtreatment. Retrieved February 28, 2015, from http://www.healthcentral.com/breast-cancer/c/78/162572/redefining-overtreatment/

Huff, C. (2014, January 1). The DCIS Dilemma. Cure, 34-40.

See more helpful articles:
10 Breast Cancer Vocabulary Words You Should Know Right Now
Just Diagnosed? We Can Help

Fast FAQS: DCIS
Lumpectomy vs. Mastectomy: Only You Can Choose

Breast cancer survivor and award-winning author PJ Hamel, a long-time contributor to the HealthCentral network, counsels women with breast cancer through the volunteer program at her local hospital. She founded and manages an active online survivor support network.