08/11/2016 05:35 GMT | Updated 05/11/2017 05:12 GMT

Inflammatory Breast Cancer - Don't Miss The Signs

Inflammatory breast cancer (IBC) is rare, comprising just 1-4% of all breast cancers. So why do you need to know about it?

Well for two important reasons:

1. It grows rapidly and spreads quickly

2. It is very easy to miss because:

  • Often there is no lump
  • The appearance may mimic infection (mastitis) or injury (bruising)

So this breast cancer is sometimes overlooked and life-saving treatment delayed. Let me share the story of Terry Arnold, founder of The IBC Network Foundation in the USA. Terry woke up one day to find one of her breasts had become red and hot. Her doctor treated her for mastitis, but antibiotics didn't improve things. After seeing five different doctors over four months she was eventually diagnosed with Inflammatory Breast Cancer, and told the cancer was advanced and she would probably die imminently. Terry took control and asked to go to MD Anderson hospital - a centre of excellence for cancer in USA. That was in 2007 and currently she has no evidence of disease. We wish this continues for her.

Terry's story is not unusual. What is slightly unusual was her persistence in going to doctor after doctor until she was diagnosed, and then her insistence on going to the best cancer centre she could find. This probably saved her life. So let's arm you with some facts, to give you the best chance, if it should happen to you.

What does it look like?

Inflammatory Breast Cancer doesn't usually form a lump (only in around 10% of people). Instead, it invades the breast skin, and blocks the lymph vessels within it, resulting in an unusual appearance. Fluid build-up within the skin causes it to swell and become discoloured, and the hair follicles enlarge, forming lots of small pits.

This creates the classical appearance of IBC, where the skin resembles orange peel (called 'peau d'orange').

However this classical appearance isn't always seen either. 2016-11-03-1478182827-1553826-IBC.jpg

The breast may become red, hot and swollen, resembling infection (see the photograph). This is particularly important during breast-feeding, as it can easily be mistaken for mastitis.

If 'mastitis' doesn't respond to antibiotics, whether breast-feeding or at other times in your life, IBC should be considered urgently.

Other signs which may be present

Sometimes the skin appears bruised, or ridges or welts appear. There may be ulceration. Sometimes the nipple inverts or leaks fluid/blood, and there may be enlarged lymph nodes in the armpit or collar bone area.

If any of these changes occur, you must see a doctor without delay.

How is it Diagnosed?

Because there may be no lump, and because it often occurs in younger women, with denser breast tissue, it may not be picked up on a mammogram.

Biopsy of the affected skin is key to diagnosis, and PET or CAT scans and bone scans are usually needed, because, unfortunately, this cancer tends to spread early.

The Outlook for Inflammatory Breast Cancer

The outlook for IBC used to be very poor. It is still not as good as for other breast cancers, but with modern treatment it has improved, and recent molecular research has yielded potential new hope.

Treatment of IBC

Chemotherapy is usually started before surgery. Then full mastectomy with removal of local lymph nodes is generally needed, followed by radiotherapy and, afterwards, more chemotherapy.

In some cases, other treatments such as herceptin or anti-oestrogens including tamoxifen may help.

What Should You Do?

  • If you notice any unusual and persistent changes in your breast, not necessarily a lump, you must see your doctor without delay. The chances are it will not be breast cancer, but it is far better to have it checked out.
  • If apparent mastitis doesn't respond completely to antibiotics, you should be referred to a breast clinic straight away.
  • If you are told it can't be cancer, because you are too young, for example, do persist until the doctor agrees to send you for a biopsy. I can tell you several tales of young women whose worries were dismissed by their doctors only to find out much later that they had cancer. I must emphasise, the chances are it won't be cancer, but it is important to check it.

For more information on Breast Cancer please read my book: From Both Ends of the Stethoscope: Getting through breast cancer - by a doctor who knows

For more about IBC: National Cancer Institute, Cancer Research UK, Frost MagazineThe IBC Network Foundation

Note: These articles express personal views. No warranty is made as to the accuracy or completeness of information given and you should always consult a doctor if you need medical advice

Many thanks to The IBC Network Foundation for permission to use the photograph featured in this article.