It’s not up to me to explain in technical terms what Inflammatory Breast Cancer is. Nevertheless, I’d like to talk about it, in my own way. Hopefully telling my story will contribute educating women about this particular type of breast cancer, little-known, very rare, very aggressive and very often misdiagnosed.
We all believe that breast cancer has the shape of a little ball. Doctors teach us to control ourselves by massaging our breasts (which I never did by the way) in search of a solid mass. But only few people know that there are also tumors that cannot be recognized in this way. There are tumors that cannot be identified by an ultrasound, not even by a mammogram, but only by an MRI (Magnetic Resonance Imaging). This is because – from what I understand – the density of the tumor tissue is very similar to that of healthy tissue. So how can we recognize IBC? There comes a day that: the breast becomes red, swollen, hot and the skin may also present the characteristic ‘orange peel’ or ‘peau d’orange’. At least this is the way it presented itself to me. And generally there is not much a woman can do to recognize it earlier because, as a matter of fact, very often there is no identifiable underlying mass. Once the inflammation is exploded, you must hope that your generic doctor immediately sends you to a specialist instead of trying to cure it with repeated cycles of antibiotics. This would only delay the diagnosis and of corse would worsen the prognosis.
In my case, 6 months (!) before the diagnosis, a blue spot on my right breast appeared… one day, just like this, overnight. I thought it was a hematoma. Having small children it looked plausible to me because at the time we were often playing in the bed. At that moment, the fact that few years before my aunt died of breast cancer did not touch me at all. We all know that cancer is a real disease, but for some reason, we always believe it to be something that affects others. We feel so good, we are busy with family and work, time runs out, it cannot be about us!
I was wrong: it was a tumor, to be precise cancer because I had a regional metastases under the armpit. I just went on and on six months with that ‘thing’ on my right breast. Four months before the diagnosis my (dutch) generic doctor say by looking at that not well identified stain… ‘ Hmm, it seems harmless, when you’re done with breastfeeding we will do a mammogram…’, so calmly and confidently.
In hindsight I say… but how could I be so stupid to get around with that ‘thing’ on the breast thinking it might be something harmless? Am I stupid or what? After all, however, the doctor had reassured me, and that was enough to keep away the fear. Because of this I say: we are our first doctors, do not underestimate the anomalies, even if your frantic life is totally absorbing you! Make room for a checkup and above all … require a specialist! In June, when I went to the doctor for the first time, it would have been enough sending me to a dermatologist, who surely would have investigated. This would not have changed anything in terms of therapy, because the lymph nodes would have been take out anyway… so sneaky is this type of cancer! But I could have started chemotherapy maybe four months before, and this would have significantly improved the prognosis.
Because of this it is so important for me to talk about it. I’d like to contribute in spreading knowledge about the symptoms of this illness. The thought that my experience might possibly help someone else makes my path easier… in the hope that all this makes sense.