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

Patient Thoughts on Medical Tests for Research

Here is a guest post I wrote earlier this year for METAvivor called “How Do People Feel about Bone Marrow Exams?” It was based on a study with Bonnie King from Stanford. While this may be one of the more gruesome-sounding medical procedures that some patients go through, it is not necessarily unique.

Too often, researchers think about all of the cool data they can collect during a clinical trial or research study, without thinking about what is would be like to experience all of those test procedures. Well, patients think about it, and often wonder what is wrong with the researchers!

I’m always perplexed when I hear about “adherence” issues in clinical trials. It used to be called “compliance” but that wasn’t as accurate, and brought up more negative connotations for the research community.

The fact is, for patients, endurance is the best term.

– Deborah Collyar

Staying in a clinical trial, or on any prolonged treatment plan, is an endurance test. There are many unpleasant, and sometimes risky, things that you have to do but hopefully you will get something out of it at the end. Patients hope for positive responses to treatment, or even remission, but that is not always possible.

x-ray film of the brain computed tomography

This is one of many reasons why it is important for those of us who represent patients to be involved in research discussions, from conceptual design to trial completion. We ask questions, such as, “Why do you need x number of these tests? Are they absolutely necessary to answer the questions in this study? What else could be done? Have you thought about asking the patient?”

Let’s work together to make the experience of participating in clinical trials as smooth as possible. Trial participants contribute so much already – they deserve to respect and consideration when we ask them to do things for research.

 

Getting Real about Patients & Clinical Trials

I’ve been asked countless times to write about patients and clinical trials. Guess it’s time to share what I’ve learned, along with other patient advocates, as we work beside researchers in the proverbial trenches. Just so happens that this post coincides with April Fool’s Day – hope that’s not an omen!

Why this series?

This is the first in a series on Patients & Clinical Trials (CT). Why? Because clinical trials are really the only tried & true way we get new diagnostics, treatments, and preventive approaches to people. For all diseases and health conditions.

But the research system isn’t very good at it, even after 70+ years. It’s not for lack of trying – BILLIONs have been spent on tweaking existing structures, but perplexing problems persist.

Heads up on CT activities

Other themes will also emerge, based on over 20 years of changing research and medicine culture (or at least trying to). In the meantime, here are some of my activities in the CT world:

Event Inscription on Sign

Other activities:information-orange-circle_fkMzuUIu_L

  • The California Technology Assessment Forum (CTAF), part of ICER, released their recommendations from the February meeting for new drugs in diabetes and asthma.
  • CTTI just released materials from an expert meeting about the issues surrounding FDA streamlined approvals for new antibiotic drug development. A summary will be posted soon. You can also read a past post called Antibiotic Resistance – It’s Complicated!
  • Cures Within Reach focuses on ways that existing drugs can be used for other purposes. More from this group in a guest blog post here soon!
  • Two DCIS studies are being funded by PCORI to help answer treatment questions for this pre-cancer, and learn how women feel about them. You can also read a past post called When is ‘Carcinoma’ Not Cancer?
  • The Center for Medical Technology Policy (CMTP) is working on recommendations to allow patients to switch treatments in a clinical trial if their cancers keep growing.
  • The Metastatic Breast Cancer Alliance (MBCA) is creating a summary of their February meeting from the Research Task Force to Advance Progress.
  • The NC ProCESS project on prostate cancer has convened a patient advisory board to help communicate effectively with prostate survivors in their study.
  • Two groups I’m working with (MRCT and the NCI NCTN Biospecimen Banks) are discussing how to handle the challenges of giving individual research results to patients.

You can also read past CT posts about:

There are many other clinical trial happenings – these are just some of the ones in which I’m involved! Yes, it’s heavy on cancer, but remember that cancers cover the gamut from rare diseases to millions of people.

Updates will be posted regularly. Let me know what you’d like to hear about. TTFN.

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.

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.

A Press Release!

Please excuse my exuberance. This is my first, ever, press release thanks to FirstEditionDesignPublishing.com! It feels good to get this done, and I thank Thea Tlsty and Philippe Gascard for their insights and hard work while working on the DCIS Dilemmas eBook. Click on the image for the full press release.

DCIS Dilemmas eBook - Press Release

Now on to 2016 – Happy New Year!