Supporting women whose lives have been touched by breast cancer

Inflammatory Breast Cancer

You don’t have to have a lump to have breast cancer

by F

My Story

At the age of 36 I had a hysterectomy but kept my ovaries. After that, although I didn’t have a regular cycle I did experience PMS symptoms including swollen, tender breasts. These symptoms would last for about 2 weeks, sometimes longer.

When I was 43 I was referred to the breast clinic with a suspicious lump in my left breast which turned out to be a cyst. The mammogram however showed some worrying calcifications in my right breast and I was therefore put on 3 monthly mammograms and ultrasound scans.

Strangely I had just ‘graduated’ to my first 6 month check when I developed breast cancer in my left breast.

It was Oct 2005 and as usual both breasts had become swollen and tender. After 2 weeks my right breast had returned to normal but my left breast remained swollen and achy. By week 3 it was pink and warm to touch.

My 6 month check was only 2 weeks away so I went to see my GP. He thought I probably had an infection, prescribed antibiotics and reassured me, as did others, that you don’t have pain with breast cancer! Cancer had never entered my head. I had no lump and I had been checked regularly for 2 years. The antibiotics made no difference.

At clinic I was sent for an immediate mammogram. It proved impossible because my breast was so swollen and painful. An ultrasound with the Chief Radiologist was set up for the following morning and I went home knowing that the surgeon was ‘very concerned’.

The radiologist said although he could obviously see my breast was swollen he was unable to see why. He asked if he could take several biopsies, the results would take a week.

When my husband removed the dressings we knew I had breast cancer. I remember thinking they wouldn’t have put me through this if they weren’t fairly sure of the outcome.

In December 2005 I was diagnosed with Inflammatory Ductal Carcinoma, turns that’s another name for IBC but it was several months before I learnt that so I was unaware of just how much trouble I was in. I had a series of tests for staging; Chest x ray, bloods, bone, liver and MRI scans. They all came back clear.

In January 2006 I started chemotherapy. The plan was 4 x FEC then 4 X Taxotere. I had such a good response to the Taxotere they increased it to 6 cycles and half way through added in Herceptin as I am HER2. A complete mastectomy and radiotherapy were to follow, then a hormone treatment.

I was referred back to the surgeon in July on completion of chemo. As my oncologist was now on holiday the surgeon called another oncologist in for a second opinion on what to do next. This oncologist said surgery was out of the question, ever, and that I should continue with the Herceptin as I’d had a good response to see if it would improve the skin. The skin was still quite thick. He asked to see me in 4 weeks.

However between finishing chemotherapy in July and November blisters had begun to appear on my breast. I saw this new oncologist 3 times and asked about them at each appointment but was given no answer as to what they were.

In November I phoned my original oncologists secretary for an urgent appointment. The blisters had begun to bleed and I wanted a second opinion.

I had an emergency mastectomy the following week and was put on Tamoxifen. The Herceptin was stopped as they couldn’t be sure if it had worked for me.

I returned to work in January 2007 but unfortunately in May I had a local recurrence in my scar. IBC likes to attack the skin. I had a WLE and full set of scans which again came back clear. My hormone treatment was changed from Tamoxifen to Femera.

In September I was diagnosed with a second recurrence in the skin. Monthly Zoladex injections were added to the hormone and I was referred to The Royal Marsden for a second opinion.

The Marsden agreed I’d had the best treatment so far and with my current hormonal treatment. They ordered a further set of scans for restaging, again they came back clear.

Today I am back working full time. I am being closely monitored by my local oncologist and the Marsden. The hormone treatment is controlling the cancer and keeping it contained in the skin. If it stops doing the job there are other options to explore.

I am currently fit and well and enjoying life 2 years post diagnosis.