My name is Elaine ‘Laney’ Cummings and I live in a small village in County Durham, England. I am a high school teacher and have been married for over 30 years and have one teenage son. I was diagnosed with Inflammatory Breast Cancer in 2000 aged 46. I had never heard of Inflammatory Breast Cancer and was only concerned that they were telling me I had a very aggressive type of breast cancer and when I asked for my initial prognosis the oncologist told me not to be concerned with that but the surgeon bluntly told me I was seriously ill and only had a 20% chance to survive a year. How does anyone cope with that? I went home and tried to stay positive for the sake of my husband and 11 year old son – I was determined this wasn’t going to beat me.
I looked for help on the internet and couldn’t find any in the UK – the big cancer organizations could only offer me leaflets telling me how bad it was. To learn you not only have an aggressive cancer but you have the worst kind of breast cancer was mind-numbing! I was determined that if I should survive I would form some sort of support group and charity in the UK so that women diagnosed with IBC would have some hope. Coping with such a serious diagnosis is very difficult and keeping positive is a defense mechanism which, during long sleepless nights seems to break down. I cried a lot, but I cried alone.
My family and friends were very supportive, and I got back to work (teaching) after a year of treatment.
I couldn’t find a survivor to talk to in this country but luckily there was a support group with lots of survivors in the USA. I learned an awful lot from them and in 2002 met up with another survivor living near me and together we worked hard to raise money and awareness and in 2004 we formed IBC UK – a registered charity to promote awareness, education and fund dedicated research.
The charity goes from strength to strength and I have met some wonderful people because of it. I will be speaking at the world’s first IBC Conference in Houston, Texas in December and will be meeting some of the founder advocates.
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