Support for you

As a charity our purpose is to educate the public and health professionals about inflammatory breast cancer (IBC), support individuals and family members diagnosed with IBC and to promote and fund IBC research in the United Kingdom.

Our main avenues of support are our private Facebook groups, but for those not on social media we also provide e-mail support. Please visit our Contact page for details.

Our support group for patients diagnosed with IBC can be found here:
Inflammatory Breast Cancer Support UK

Please note that new potential members must be screened by admins before being added to the group as IBC can be misdiagnosed. Our support group for family members can be found here:

The Inflammatory Breast Cancer Network UK Family Support Group

We also run two additional support groups: Reconstruction after IBC Treatment and Living with IBC (for patients diagnosed with metastatic/secondary IBC). Both of these groups are set to private, and we add patients to them from our main patient support group as relevant.

We believe that everyone should be given the tools and understanding to explore their options. We are a scientific data and evidence-based support service and follow the IBC treatment protocol and the International Standard of Care for IBC.

When it is possible, we arrange three face-to-face meetups per year for members in our groups. These meetups have ceased during the Covid-19 pandemic, but we hope to resume them next year.

We make it clear that we are not medical professionals. Please see our medical disclaimer below.

Medical disclaimer

Any medical information referred to in or through our site is given as information only and is not intended:

as medical diagnosis or treatment
to replace consultation with a qualified medical practitioner
to advocate or recommend the purchase of any product or to endorse or guarantee the credentials or appropriateness of any health care provider

We strongly suggest you consult a healthcare professional for specific advice about your situation.

What is Inflammatory Breast Cancer?

Inflammatory Breast Cancer (IBC) is a rare and highly fatal form of breast cancer that is not typically discovered by mammogram and often occurs prior to standard screening age recommendations for breast cancer. In the UK it makes up only around 2% of all breast cancers. It can affect both men and women.

The breast may start off as pink and become progressively redder or even purple as the tumour progresses. IBC is not just in the skin, it is scattered throughout the breast lobules or ducts and nodes. The invasive nature of IBC allows it to infiltrate the skin and produce the visual symptoms of IBC by blocking the lymphatics of the breast with cancer cells.

Although IBC has been recognised for over 200 years, many are still not aware of it. Our goal is to bring this orphaned disease into the limelight and encourage education and funding of research for this highly fatal form of breast cancer.

We need to educate as many people as possible about this type of breast cancer. These links below are The International Standard of Care in IBC, it is critical to have the correct treatment protocol in IBC as it saves and prolongs lives. There is a lot of information here in these links which can be overwhelming to read, but please share them with your doctors if there is any doubt over your treatment path.

International Standard of Care for Inflammatory Breast Cancer

International Standard of Care Algorithm

Tips for Patients

We have a list of different tips for different stages of care, please see the links below to for specific tips.

Meet Ups

Our IBC support group aims to organise three meetups a year. Past meetups have been held at various locations throughout the UK and in Ireland.

Each year one of our meetups takes place at the University of Birmingham where participants can take a tour of the tissue bank and attend a question & answer session with two IBC experts: our charity-funded researcher and a leading IBC breast oncologist. These educational sessions at the university are followed by a group dinner in Birmingham.

As inflammatory breast cancer is so rare, without our meetups many of our attendees would not have had a chance to meet others with the same diagnosis. Contact us if you would like to join us. See below some photos of our previous meet ups!