The story of Shelley
Inflammatory breast cancer is a rare form of cancer and accounts for around 2% of all breast cancers. It is often missed because the symptoms can be attributed to infections or insect bites and valuable time can be wasted trying antibiotics. As well as being rare, it is an aggressive cancer and the prognosis at diagnosis is often poor together with a greater risk of it returning after treatment.
I noticed a change in my breast around new year 2012. There was no lump, nothing really specific except one breast felt different to the other. In my early 50s, I initially put it down to my age. The body changes with age and I thought this was another step. I went to see my GP about something unrelated and, as I was in her consulting room, asked if she would take a look at my breast. She also thought it felt different in consistency to the other but didn’t think there was a problem. As a final thought she asked if I would like to be referred to the hospital ‘just to put your mind at rest’. I agreed and that is probably what saved my life.
There was a period of confusion at the hospital I had been referred to and a month later, I still did not have an appointment. In this time, my breast changes were obvious even to the eye. I had redness, swelling and the nipple had started to invert. I also had the classic ‘peau d’orange’ skin which is so common with this type of cancer. I called my GP to ask about the appointment and she said she would send the request through again as an emergency although she said ‘I don’t think you have cancer’. By then, I did. Dr Google was good at providing me with information and by the time I went to the hospital a week later, I had diagnosed my type of cancer and knew it had travelled to the lymph nodes.
The surgeon who diagnosed me is well known in his field but, in my opinion, should not be allowed anywhere near a conscious patient. After being examined by him, having a mammogram, an ultrasound and biopsy, I was called back to the consultant’s office. “I am very worried about you. The radiographer is very worried about you and I think you should prepare yourself”. I thought he was telling me my cancer was terminal and began to cry. I asked him what he meant and he said “When you came in here this morning you said you didn’t think it looked good and I thought you had prepared yourself.” He offered me the report from the ultrasound and asked if I wanted to read it. I asked if I should. He said “Well it doesn’t make very nice reading”. Having a cancer diagnosis given in this way is devastating and I can’t bear to look at this consultant when I see him in the hospital. Fortunately I was allocated a different surgeon.
My treatment was swift and harsh. I had 3 doses of FEC and 3 doses of Docetaxel. Within a few days my hair fell out and I began to feel serious fatigue. I was not nauseous at all which was a great relief. 3 weeks after I had finished chemotherapy I had a complete mastectomy with removal of all the lymph nodes in my arm. There was cancer in 4 nodes but the surgeon said she thought she had clear margins. The tumour, blasted by the chemotherapy, had shrunk to a mere 8cm. Its growth rate had been huge and invades the whole breast tissue forming a sheath rather than a lump. After surgery I developed MRSA in the wound which delayed healing. As soon as the MRSA had been treated, I began a course of radiotherapy. Every day for 5 weeks I had radiotherapy and began a further course of chemotherapy at the same time. I had 3 more doses of Docetaxel which I had found to be the hardest drug to take. The impact of both radiotherapy and chemotherapy together made me feel extremely ill but I finished that treatment in December 2012, just before Christmas.
My tumour is not fed by Oestrogen or Progesterone but does react to a protein so I was also prescribed Herceptin for 12 months. My last dose was in June 2013 which completed all my treatment.
I am left with extreme fatigue and forgetfulness – commonly known as chemo brain. I can’t remember people’s names, events or what someone said 5 minutes ago. I have widespread pain and my mastectomy wound has still not fully healed. Reconstruction is not generally recommended in cases of IBC but I am starting to think I might go that way. It’s not through vanity but life being lopsided is just too intrusive and I don’t want to have to think about it all the time. I also have lymphoedema in my arm due to the lymph nodes being removed. This means I have to wear a sleeve and glove every day to help reduce swelling. I also have exercises to do and have to take great care of my arm. An insect bite or scratch could prove to be very serious and at the very least would require antibiotics.
I sometimes feel down about what has happened. I feel I am a very different person now which is good in some ways and not so good in others. I will never get back to normal, whatever that was. I feel I am lucky to be alive and do try to enjoy each day and make the most of my opportunities.
My main message is that just because it’s not a lump, it doesn’t mean it’s not cancer. Be vigilant and check your breasts regularly, reporting any change to your doctor. Ensure you have good levels of vitamin D as there are links between Vitamin D deficiency and cancer. Anecdotally, just about all the people I know who also have had cancer had low levels of Vitamin D when they were diagnosed.
Inflammatory breast cancer is not a life sentence but it’s aggressive and needs to be caught early.