IBC isn't so rare because I have it

As we are still in October (breast cancer awareness month) I have chosen to write about my experiences with this type of breast cancer. Now I’m not writing this to scare anyone but if it makes just one person become aware, now or in the future, then it will be worth it. I can’t bare those TV adverts and radio adverts about cancer but I understand that it’s bringing awareness but for some people who hear those dreaded words their minds go into overdrive when it was nothing after all. Well this isn’t designed to do that.

You see I was misdiagnosed by 9 different specialists before I was told it was IBC (inflammatory breast cancer). Even 3 breast specialist, 1 from Warrington and 2 from Wigan had no clue to what it was. So with the symptoms still persisting I decided to find out myself via the internet. A dangerous thing to do, I know but I wanted answers and had nowhere to turn. Swelling, itching, redness, no lump, I was ticking them off the list I had printed out as my symptoms got worse. By the time I was finally diagnosed 13th May 2011 I had a weeping inverted nipple and orange peel-like skin and then the whirlwind began.

I had read that IBC goes undetected for so long that by the time it is diagnosed it’s too late, it’s stage 4. (it’s not detected by mammograms either) I didn’t even know what stage mine was or even if I could be treated. I remember getting no sleep that weekend as I was diagnosed on a Friday. It was Tuesday before I found out that I could be treated and the following Friday I began my treatment after a Wednesday meeting with the chemo nurses and a Thursday full of scans.

My hair fell out after two weeks but that was the least of worries as I ploughed every ounce of my strength into overcoming this disease. Continuing to play tennis and go to the gym, I kept myself busy as the kids had not long started school so school runs were inevitable. I wasn’t going to let this cancer or its treatment disrupt my life. And then in September 2011 when my oncologist was on holiday, I was told by his registrar that the redness coming back in my breast meant I was chemo- resistant and the chemo I was on was no longer working. The fear took over and knowing only a little about IBC I was unaware that the cancer has to be killed off completely with chemotherapy before I was to have a mastectomy as it persists. I decided on the operation which was brought forward a few months, as I just wanted rid of it. I was made aware of the consequences by a lady in America but me being me I went ahead and thought I’ll deal with the consequences when and if it comes back. She was right. I had the op in October and by Christmas there was redness in my skin. The Breast surgeon told me it was all part of the skin recovering from the op. New Year I went back and insisted on a biopsy to which he unwillingly obliged. We were both as flabbergasted as each other when I was told it was still there.

From then on I have never been free of IBC. As I started on my 3 weeks of radiotherapy, I was symptom free for 5 months and then I was back on chemotherapy. A different surgeon told me he could cure me if I had the problematic skin removed. How wrong he was and how naive was I.

You see IBC isn’t that rare because I have it but specialist in their field no nothing of it and that was what I was up against. Luckily my oncologist has been the only person in the know of IBC. After redness appeared on my skin again after the crash I just put it down to the accident and after 3 registrars had seen me to hear of my discomfort and a surgeon who was thorough enough to give me a needle test (all of which were negative) it was my oncologist who told me the cancer is active again and could tell from my symptoms. It was him who put me on Kadcyla so you can see why I have such admiration and respect for him.

All that said the past is the past for me and what’s done is done. I can only deal with what is happening to me now and I live from day to day hoping that there is something waiting around the corner for me. To everyone reading this know what IBC is and that in itself might save someone’s life

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