Inflammatory Breast Cancer Experiences

I had never heard of Inflammatory Breast Cancer before being diagnosed with it, but now know I had rather classic symptoms. At the beginning of July 2008 my breast became very itchy, with no sign of an insect bite. I had always had larger breasts and had done self-examination and even been proactive in having a mammagram at 42 years old (free screening starts in New Zealand at 45) but nothing about an itchy breast signalled breast cancer to me. It was relieved somewhat by topical ointments but remained itchy, sometimes aggravantingly so. I thought it was washing powder residue in my bra or some such thing irritating my skin.
About a week and a half later, on the first day of my period my breast started aching - as I was 45 and it was the first day of my period - I put it down to hormonal pain.
3 days later it was still aching. I put my bra on in the morning and my breast still looked normal to me. When I took it off that night - it was big, red and funny-looking. There was swelling and redness over approximately 75% of my right breast. I was a 'G' cup and it had swelled to an 'H' the skin was very puffy looking and the pores were sunken, giving it the classic 'orange peel' look. The aureole around my nipple was puckered and raised and had gone a paler colour and my nipple had inverted, and this had all just happened in the course of a day.
I managed to get to the Drs a day and a half later. My GP - primary care Dr - started me on antibiotics and saw me every couple of days to monitor response. When there had been no response after a week, even though he still thought it was an infection, he decided to send me to see a private breast clinic, that deals with all sorts of breast issues. (side-note New Zealand has a public health system but there are private specialists working in most fields as well)
He told me I needed to see them straight away and I managed to get an appointment that same week (less than 2 weeks after my breast 'blew up')
The very first visit the breast physician suspected IBC, although she didnt tell me. Ultrasounds, mammogram were done. Ultrasound showed a small collection of fluid in one part of my breast. Mammogram just showed my right breast was denser than my left and that the skin layers itself were 4mm thick . They did a final needle aspiration of the collection of fluid, and when that came out clear, then proceeded to take several samples of core needle biopsies. I was told to come back on Monday for the results. Naively, even though they had taken tissue, I didnt seriously think 'cancer' as nothing in my symptoms reflected anything I had ever heard about breast cancer.
On Monday, we were told the news, they warned us to be careful what we read on the internet and that I would have to start chemotherapy as soon as possible and that I would eventually have to have a mastectomy and lose my entire breast. They referred me to an oncologist and we had CT and bone scans done privately within a week to expedite the start of my treatment. The CT and Bone scan showed that I had no distant metastasis at that stage, but that the cacner was in my breast, axillary nodes and supraclavicular nodes (above the collar bone). I started Chemo 3 weeks after diagnosis in the public health system. I had never heard of Inflammatory Breast Cancer before being diagnosed with it, but now know I had rather classic symptoms. At the beginning of July 2008 my breast became very itchy, with no sign of an insect bite. I had always had larger breasts and had done self-examination and even been proactive in having a mammagram at 42 years old (free screening starts in New Zealand at 45) but nothing about an itchy breast signalled breast cancer to me. It was relieved somewhat by topical ointments but remained itchy, sometimes aggravantingly so. I thought it was washing powder residue in my bra or some such thing irritating my skin.
About a week and a half later, on the first day of my period my breast started aching - as I was 45 and it was the first day of my period - I put it down to hormonal pain.
3 days later it was still aching. I put my bra on in the morning and my breast still looked normal to me. When I took it off that night - it was big, red and funny-looking. There was swelling and redness over approximately 75% of my right breast. I was a 'G' cup and it had swelled to an 'H' the skin was very puffy looking and the pores were sunken, giving it the classic 'orange peel' look. The aureole around my nipple was puckered and raised and had gone a paler colour and my nipple had inverted, and this had all just happened in the course of a day.
I managed to get to the Drs a day and a half later. My GP - primary care Dr - started me on antibiotics and saw me every couple of days to monitor response. When there had been no response after a week, even though he still thought it was an infection, he decided to send me to see a private breast clinic, that deals with all sorts of breast issues. (side-note New Zealand has a public health system but there are private specialists working in most fields as well)
He told me I needed to see them straight away and I managed to get an appointment that same week (less than 2 weeks after my breast 'blew up')
The very first visit the breast physician suspected IBC, although she didnt tell me. Ultrasounds, mammogram were done. Ultrasound showed a small collection of fluid in one part of my breast. Mammogram just showed my right breast was denser than my left and that the skin layers itself were 4mm thick . They did a final needle aspiration of the collection of fluid, and when that came out clear, then proceeded to take several samples of core needle biopsies. I was told to come back on Monday for the results. Naively, even though they had taken tissue, I didnt seriously think 'cancer' as nothing in my symptoms reflected anything I had ever heard about breast cancer.
On Monday, we were told the news, they warned us to be careful what we read on the internet and that I would have to start chemotherapy as soon as possible and that I would eventually have to have a mastectomy and lose my entire breast. They referred me to an oncologist and we had CT and bone scans done privately within a week to expedite the start of my treatment. The CT and Bone scan showed that I had no distant metastasis at that stage, but that the cacner was in my breast, axillary nodes and supraclavicular nodes (above the collar bone). I started Chemo 3 weeks after diagnosis in the public health system.