Answers for DCIS are coming

Great news for those confused about Ductal Carcinoma In Situ (DCIS). That includes just about everyone, from doctors and researchers, to patients and their families!

Four new projects and resources are available: COMET logo

  1. A new study called COMET just opened that will look at whether women with low-risk DCIS will do just as well with active monitoring (also called Active Surveillance) as those who choose surgery, radiation and/or hormonal therapy. Watch the video.

    “The aim of this work is not to try and determine what’s ‘better,’ but rather to quantify the tradeoffs associated with these two approaches to DCIS treatment.”
    – Dr. Shelley Hwang, Principal Investigator

  2. A new website for DCIS also opened this week to help the over 50,000 women per year who are diagnosed with DCIS each year in the U.S. Of course, the site is also available for women worldwide.
  3. SHARE is sponsoring a webinar called “DCIS: What You Need to Know” that features
    SHARE DCIS webinaryours truly on March 22 at noon Eastern Time (US). We’ll explain what DCIS is, how to think about it, and what is needed to make rational decisions when faced with a diagnosis.
  4.  A new international research project called “Preventing Unnecessary Breast Cancer Treatment” was recently announced to learn how to find DCIS that will not turn into breast cancer so women won’t have to deal with treatment issues.CRUK DCIS graphic

Together, these projects can tell us how to deal with DCIS, what risk factors may cause approximately 1 in 10 women to develop a later invasive breast cancer, and hopefully, that Active Surveillance works just as well as invasive treatments.

By the way, about 90% of women with DCIS won’t get invasive breast cancer!

If you can’t wait to find out more about DCIS, check out this post or get the DCIS Dilemmas ebook. Stay tuned for more about these projects and other findings about DCIS!

COMET study team

Some members of the COMET Study team

6 Ways to Turn Data into a Good Read

Ever take a bunch of facts and turn them into something readable? For real people? From many dry scientific journals? When sources disagree? Vehemently?

That is exactly what UCSF researchers Thea Tlsty, PhD, Philippe Gascard, PhD, and I did. Here is what we learned in order to help make sense out of a major worry for women.

But First, Why?

Computer generated 3D photo rendering.

We want to help ~60,000 people (mostly women) who deal with a condition called Ductal Carcinoma In Situ (DCIS) each year. It’s often over-treated, so women want to know what to do. Many questions surround DCIS, and researchers argue at every step along the way.

“DCIS means cells inside the breast duct look and behave like cancer cells. DCIS cells, though, stay inside the ducts and do not travel anywhere else in the body.”

Excerpt From: Deborah E. Collyar. “DCIS Dilemmas

For instance, is DCIS really cancer? Some say no, and want to change its name. Others treat everyone as if they have breast cancer. Still others want to find the 1 out of 10 women (11%) who will eventually get invasive breast cancer so they can be treated, or find the next 11% who might get another DCIS that won’t affect how long they live.

“When you put a frightening term like carcinoma on a lesion that, on average, doesn’t go on to invade normal tissue, that can prompt women who are justifiably frightened of the word cancer to have therapy that’s every bit as aggressive as if they had a true invasive cancer.”

Barry Kramer, Director, Division of Cancer Prevention at the National Cancer Institute in an article from Proto

A few focus on finding almost 8 of 10 women (78%) who will only have DCIS once, and don’t need to endure the long-term problems of over-treatment. Our efforts turned into a new eBook called DCIS Dilemmas: Discussions about Ductal Carcinoma and the Research Behind It. So, how did we do it?

How to group complex data

1. Gather a Range of Data

Research is important, but don’t expect simple answers. We scoured scientific studies (in journals and conferences), and separated conclusions and opinions into different categories. We set a rule that all of the facts we used had to come from at least 2-3 different sources. Articles like this one from HealthNewsReview.org were also helpful.

“New DCIS study, news release lead to (very) mixed messages: ‘And we wonder why patients get confused’”

Dave Mosher in a HealthNewReview.org article

2. Find Out What is Important to Readers

Before starting the eBook, we surveyed 3 groups:

Important Stamp Shows Critical Information Or Documents

  • Women who were cancer-free
  • Women who had DCIS
  • Women who had invasive breast cancer (IBC)

We also held a DCIS Forum in San Francisco to present real information, dispel myths, and hear directly what women want to know.

3. Put It in Perspective

While DCIS is serious, it is not fatal. Unfortunately, many women are led to believe they have breast cancer and are treated this way even though most (over 3 out of 4) will never have another event. The important part is to figure out who is actually at risk for a future invasive breast cancer and what they can do about it.

4. Explain Why Everyone is Confused

Puzzled Confused Lost Signpost Shows Puzzling Problem

DCIS is as confusing to doctors and researchers as it is to patients. A lot of this is due to old ways of thinking, and old terms that are still used. For instance, most doctors and researchers talk about the risk of a “recurrence,” meaning another DCIS or breast cancer. This is actually impossible for DCIS! The old mindset treats DCIS as if it is cancer, not a pre-cancer. It’s time to change that.

5. Explain What Can Be Done About It

It was clear from women that they want to know what to do about DCIS. So, we shared information about:

  • How DCIS is diagnosed ebook DCIS Dilemmas - older woman w tablet
  • The different kinds of treatment used (including Active Surveillance)
  • What risks exist for all women, as well as risks after being diagnosed with DCIS

We also listed current research that will hopefully produce clearer answers in the future.

6. List Resources for All to See

We wanted full disclosure on all of our sources, so we listed everything we reviewed in categories for those who want more information. We also flagged some of the controversies so people can make up their own minds.

What Do You Do?

List your ideas in the comments, so we can learn from each other. We’d also appreciate your feedback on our approach. If you’re interested, check out DCIS Dilemmas: Discussions about Ductal Carcinoma and the Research Behind It and let us know what you think!

All content © 2016 by Deborah Collyar unless otherwise specified. All rights reserved. Permission is granted to use short quotes provided a link back to this page and proper attribution is given to me as the original author.

When is ‘Carcinoma’ not Cancer?

When it’s called “Ductal Carcinoma In Situ” – also known as DCIS, Stage 0 or pre-invasive breast cancer, and other names too.

DCIS in perspective

# of DCIS cases compared to Invasive Breast Cancer (IBC)

DCIS is confusing. Some call it an early form of breast cancer while others want ‘carcinoma’ taken out of the name because it is NOT cancer. The debate heated up (again), based on some new studies that the U.S. National Cancer Institute (NCI) explains here.

About 50,040 people will get DCIS this year according to the American Cancer Society but most are treated as if they have breast cancer (known as ‘over-treatment’). To compare, about 234,000 people will get breast cancer. And yes, about 1% of the people will be men.

Who is at risk?

So far, the risk factors for a first DCIS are the same as the risks for breast cancer. For those who have DCIS, the risk factors change:

  • About 1 in 10 of them will get another DCIS within 10 years.
  • About 1 in 10 will get invasive breast cancer within 10 years.
  • This means that about 8 in 10 people diagnosed with DCIS don’t actually have to worry about it again.

So, how do we find out which people should get treated? There are some known clues, like:

  • People who found their DCIS by feel (palpation), and not on a mammogram.
  • People diagnosed before age 35 (very few are in this group).
  • There are fewer African-American women who get DCIS, but they seem to have a higher risk of getting a future event.
  • DCIS lesions that still have abnormal cells close to the outside border (margin).
  • Bigger lesions or more than one in the breast. DCIS that has a higher grade also has more risk.

Researchers are searching for more specific clues. I’ve been working with some of them and (warning: shameless plug alert) a new eBook will be available soon that explains more. Hopefully, they will be able to find those at the highest risk of another DCIS or invasive breast cancer. That may save the other 80% the hassle and pain of treatment.

Update: the DCIS Dilemmas eBook is now available! You can get it at your favorite eBook store (Amazon, Apple iBooks, Barnes & Noble, Google Books, etc.). Please let me know what you think!

All content © 2015 by Deborah Collyar unless otherwise specified. All rights reserved. Permission is granted to use short quotes provided a link back to this page and proper attribution is given to me as the original author.