Hi, I’m Heather. I am 38, Mum to a 5 year old, an Architect and (so far) a Breast Cancer survivor. Here’s a little of my story….

Cancer didn’t even figure on my radar. No one in my family had cancer, I was too young, I’d breast fed my son (to within a year of diagnosis)… this was something that happened to other people. So when (Hogmanay 03/04) I noticed a slight swelling in my left breast – a pertness one might say – I put it down to hormones or pregnancy. But my period arrived so asked my GP about it while I was seeing her about something else. Nothing to worry about, some sort of infection, but since there was no obvious cause I was referred to the Breast Unit to get it checked. Two weeks later I had my diagnosis – Inflammatory Breast Cancer (IBC)! How? I had no lump! The swelling had increased since seeing the GP, and the nipple inverted, but surely it was just a bad case of mastitis – some antibiotics would do the trick? Not so.

I looked up IBC and found that it is rare (about 2% of breast cancer cases in the UK) and that it’s associated with comparatively poor survival. Until recently it was almost a death sentence but now the stats give about 40-50% survival after 5 years. I had a fight on my hands. My son was still only 1 year old; it would be too unfair to have to leave him.

The biggest impact, as one might expect, has been on my family. For about a year I had to relinquish the roles that I had in life as I took on the new role of full-time patient. My husband became basically a single parent as well as my carer whilst working full time to keep some money coming in. He’s been a star, and the fact he’s kept a glint in his eye for me even when I’m knackered, scarred and crabbit has been the best lifeline imaginable.

I was treated at the Western General in Edinburgh (on the dear old NHS) and I have nothing but praise for the staff there. A few tripped up and assumed my mother was the patient (BC is much more common at her age than mine) but I felt a full and active partner in my treatment there and it went well. I had chemotherapy, surgery then radiotherapy with tamoxifen for 5 years.  I'm still well over 3 years after diagnosis - something I never thought I'd be able to say -  and I’ve now been given a 80% chance of being around in 10 years post diagnosis; after which time IBC generally doesn’t recur.

I want to let you know some common IBC symptoms in the hope it may help someone avoid misdiagnosis, which is all too common:

• Inflammation of the breast (often rapid) and/or thickening of the skin Redness and heat, sometimes itching A puckering of the skin often likened to the texture of orange peel
• The nipple being retracted or ‘pulled in’

You do not need to have a lump to have breast cancer, get any change checked out and if a course of antibiotics doesn’t clear an apparent infection ask for a referral to a specialist unit. This is a fast acting cancer and so the quicker it is caught the better the chances of treatment being effective.

Riding has always been part of my identity, and so I was thrilled to take part in the 2005 Amazon Heart ride (Changing Gears) and get back on a bike after a few years feeling prematurely aged.  The ride meant so much to me that I've now become a trustee of Amazon Heart Trust UK and I spend what little spare time I have helping give other women the opportunity of the unique, life-affirming experience that is provided through a peer support adventure.