Dr Matthew Lam, Senior Research Communications Officer, discusses inflammatory breast cancer, a rare form of breast cancer.

Monday 27 April 2015      Research blog
Inflammatory Breast Cancer Symposium brings new focus to rare disease

Breast cancer is not just one disease but a collection of diverse and overlapping diseases.  It’s likely that you’ve heard of the most common types of breast cancer; oestrogen receptor positive, HER2 positive and triple negative breast cancer; but you may not be as aware of the rarer ones.

Inflammatory breast cancer (IBC) is a rare type of breast cancer accounting for around 2.5% of all cases.  In this blog post we shine a light on the disease and explain how experts are working to improve treatment for patients with this form of the disease.

A strange case

Although IBC is rare, the outcome for women with this type of breast cancer is often worse than others.  This is because of how aggressive it is.  IBC develops quickly and can spread rapidly to other parts of the body where it becomes life-threatening secondary breast cancer.  IBC tends to be diagnosed in women at a younger age and tumours are more likely to be oestrogen receptor negative, meaning that they can’t be treated with targeted drugs such as tamoxifen or aromatase inhibitors.

The symptoms of IBC are quite unusual too.  In some cases there are no symptoms, and when there are, they can be diverse and misdiagnosed as other conditions.  The typical symptoms reported by patients are similar to inflammation (hence the name), so include things like redness and swelling of the skin, itching and the breasts feeling firmer than usual.  When IBC is diagnosed it is often when breast cancer cells have invaded the nearby lymph nodes.  This can cause fluid to build up in the local area and cause the swelling symptoms of IBC.

The similarity of symptoms between other conditions that cause inflammation and those associated with IBC means the disease is often overlooked or dismissed.

Confusion

Penny Rutterford, 53 and from London, spoke to us about her experience of being diagnosed with IBC:

“I was diagnosed with breast cancer in April 2014 but it wasn’t until a month later that I was re-diagnosed with inflammatory breast cancer.  My symptoms started very quickly and included pain in my breast, swelling and redness. Prior to my surgery to have the tumour removed I continued to have severe pain in the breast area and the lump was getting bigger.  My doctors thought it was an infection and I was put on a few courses of antibiotics which had no effect, my tumour just kept on growing until it was the size of a tennis ball. At this point my surgery was cancelled due to concern about what they thought was an infection.”

“It was then that I was diagnosed with IBC and my surgeon was open about the fact that he and his team didn't know much about IBC given it is so rare and they hardly ever treat people with it.”

“My treatment plan had to be drastically changed and it was an extremely frightening and confusing time – I wanted to be told what to do and what was best for me, but the lack of understanding of IBC made me feel that the decision I was making wasn’t an informed one amongst all the conflicting advice.  From my experience, women with IBC are left a little bit in the dark as there doesn’t seem to be a standard of care for the disease. Finding an online support group, through The Inflammatory Breast Cancer Network UK, was therefore incredibly valuable to me as I went through my diagnosis and treatment and I know it is something that continues to be very important for many women with the disease across the country.”

On the same page

Penny’s case highlights that clinicians are not always in agreement over the best way to diagnose and treat the disease.  But clinicians and scientists haven’t pushed IBC to the background.  The UK Inflammatory Breast Cancer Working Group is a team of experts who sift through the current knowledge of IBC, make recommendations to improve care for patients and identify ways to improve research into this rare type.

The group, supported by us, recently reported in the British Journal of Cancer (and presented at the IBC Symposium in Birmingham) a set of recommendations to help standardise how IBC patients are managed across the UK.

For example, they set out strict criteria for determining which cancers are diagnosed as IBC as well as recommending the use of multiple imaging techniques to identify how far the disease has progressed.  The group also outlined the best treatment choice for each patient depending on their individual diagnosis, including minimising the occurrence of a full mastectomy (considered the standard surgical treatment for IBC) when only a portion of the breast tissue may need removing.

The group explain that by standardising the way IBC is diagnosed and treated it will make it easier for tissue banks like ours to collect vital tissue samples for research, and for researchers and clinicians to set up clinical trials specifically for IBC patients.

More accurate diagnosis

Creating stricter rules for clinicians to follow when they are diagnosing rare types of breast cancer such as this can help improve how these patients are cared for.  We hope that as a result of these guidelines fewer women will receive a late stage diagnosis and will get the best chance possible to overcome the disease.  Plus, with the added benefit it could bring to clinical research there is the exciting potential to discover new and effective treatments.

Dr Matthew Lam - Senior Research Communications Officer