Inflammatory breast cancer

Hello Gillystick,

Thanks for getting in touch. My name is Megan, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

I am sorry to hear you have been diagnosed with inflammatory breast cancer and do wish you all the best for your upcoming surgery.

I can see you have joined the Inflammatory breast cancer forum and hope you have been finding it a supportive and informative place.

Inflammatory breast cancer is a rarer breast cancer making up less than 5% of breast cancers diagnosed. It can go unnoticed as unlike other breast cancers, it doesn’t often present as a lump. Because of this, it can more often be diagnosed at a later stage where spread may have already occurred, and this can affect survival.

Therefore, I was very glad to read that for you, the cancer has not spread and to your knowledge it is not in your lymph nodes. These will most certainly be factors in your specific survival.

As it is a rarer cancer, there is a smaller pool of information, research and support dedicated to it within the UK and elsewhere.

Of course, there will be lots of information on Google, but it is important to note that not all information online is accurate or relevant for you. So, I would always encourage you to keep your searches to regulated sites such as Macmillan, Cancer Research UK and Breast Cancer Now.

You may also find other charities such as The Inflammatory Breast Cancer Network UK useful in knowing. They state that currently inflammatory breast cancer has a survival rate of only around 50%. In addition to information, they provide support via online support groups giving an opportunity to perhaps speak to survivors.

Cancer Research UK reassuringly states that the outlook for inflammatory breast cancer is improving as breast cancer treatment improves. They also give UK-wide statistics for survival for breast cancer by stage.

I would encourage you to speak with your hospital team to let them know your concerns around prognosis and get further information and support that will be specific to you.

It might be a positive experience to speak to an inflammatory breast cancer survivor and so you could ask your hospital team if they can introduce you to another patient of theirs who has had successful treatment, this is often called peer support. Breast Cancer Now’s Someone Like Me service may also be able to arrange something similar.

I did find The IBC Network Foundation’s - Stories of hope page and Nicky’s Stage 3 HER2+ Inflammatory Breast Cancer Story from The Patient Story incredibly moving and inspirational. I hope you will find these stories of women surviving uplifts you and gives you hope in an understandably worrying time.

I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Megan

Cancer Information Nurse Specialist 

Ref MD/DK