A New Hub for Information & Hope for Inflammatory Breast Cancer

/ , /by

By Ginny Mason, President
Inflammatory Breast Cancer Research Foundation

In the breast cancer field, inflammatory breast cancer remains something of an anomaly. Because it can cause skin discoloration or rash as well as swelling but may not be accompanied by a lump, it doesn’t look like typical cancer and can be difficult to diagnose. Though aggressive, it makes up just 1-5% of all breast cancers (as far as can be tracked, due to a lack of a pathological diagnosis). That means many people – including health care professionals – are unfamiliar with the disease.

As a result, it’s even more critical that people experiencing unexplained symptoms or newly diagnosed with IBC be able to quickly find accurate, helpful information. For many years, that was a daunting task. And it’s one of the reasons Inflammatory Breast Cancer Research Foundation (IBCRF) was founded in 1999 as the first nonprofit solely devoted to supporting people diagnosed with IBC.

From the earliest days of the internet, our volunteer-powered team recognized that our website was an important “first stop” that could empower patients and their loved ones with the knowledge and support to more successfully navigate diagnosis, treatment and survival. In partnership with experts in the medical field, we invested significant time and resources to curate information and create an online platform where people could learn and take action.

This January – more than two decades into our work – we are thrilled to roll out an updated website that makes it easier for anyone impacted by inflammatory breast cancer to both learn the basics and take a deeper dive. Written in simple language that is easily understood by people who are newly diagnosed, their caregivers, or the general public, IBCResearch.org has been revamped with a fresh look and feel and a responsive design that is easy to explore on any device. The site content and navigation has also been streamlined to help users quickly find important information like:

  • Symptoms: A gallery with real-life examples of what IBC can look like, and next steps if you are experiencing symptoms, is a key resource for people who may be worried about unusual changes in a breast. It also serves as an overview that can be quickly read and understood by healthcare providers and the general public.
  • Diagnosis: A list of what to expect when you are being tested for IBC, along with helpful tips for navigating the process, can enable patients and caregivers to feel more comfortable and advocate for any necessary testing.
  • Treatment: The basics on the current standard of care for IBC, as well as resources for finding a care team with experience in treating this less-common disease, helps prepare, inform and empower patients to pursue teams and treatments that align with the latest guidelines.
  • Patient Voices: Real-life stories of other IBC patients, survivors, and caregivers that provide not only information on what to expect, but hope for the future, offer readers insights and support that are also essential for our community.
  • What We Do: An overview of our work as a patient-powered nonprofit invites advocates, families and partners to explore our advocacy, alliances, grantmaking and research involvement.
  • Get Involved: Easy-to-navigate options invite not only patients but friends, family and the breast cancer community to make a difference by donating to advance research for this less-common disease, participating in a clinical trial or the IBCRF BioBank, or simply by raising awareness.

As a longtime survivor working in advocacy for more than 20 years, I’m proud of what has been accomplished by a small but dedicated (and growing!) group to advance diagnosis, research and education around IBC. Our team’s hope for this new site is that it will serve as an important first stop to continue growing our collaborations and reach – and, for those facing their own diagnosis or supporting a loved one, will make a positive impact on lives and outcomes.

I invite everyone in the breast cancer community to help spread the word about this new resource and explore ways to get involved in improving the lives of people touched by IBC. Together, we can increase our impact.

Explore the new site and learn about ways to get involved at IBCResearch.org.