cancer: Invasive Lobular Carcinoma
Date Diagnosed: 2018
Age: 47 years
My mum was diagnosed with breast cancer when she was 62, as was my auntie. I was very aware of this and have been extremely vigilant in having regular mammograms and self examinations. I have had yearly mammograms since 2015. I had one small scare in 2016 that thankfully turned out to be nothing. In March 2018 I had a mammogram and received a letter saying it was all clear and no need to come back for 2 years. Happy days!!
In August 2018 I was showering and felt a small peas size lump. I wasn't particularly concerned but after a few days I decided to go to my GP. He also wasn't concerned given the March mammogram result, but said due to my family history, I should have an ultrasound just to be safe. The ultrasound results saw something and recommended a biopsy and MRI. The result was breast cancer. Three days later I was sitting in a surgeon's office as she was informed me that I had Invasive Lobular Carcinoma. This type of cancer grows like a spider web and is extremely hard to detect. The Surgeon said I was extremely lucky to feel a lump as most women with this type of cancer don't feel anything and are usually diagnosed at stage 4.
The mass was about 2cm and I could have a lumpectomy. I was ok with that. I told work I needed three weeks off.... I'll be back in early September! How naive I was!!
One week after my surgeon appointment, I was back at the hospital for the lumpectomy. It was fine. The hospital was good and I was home a few days later. I had no concerns about anything. One week later I was back at the surgeon for my follow up appointment. I was not prepared for what she said.
The cancer has spread. Your margins weren't clear. 9 out of 20 lymph nodes are cancerous. We need to remove your breast and we highly recommend you have a double mastectomy. Shell shocked and devastated, I was a total wreck. One week later, I was back at the hospital for a double mastectomy. It wasn't what I wanted. But I felt I had no other choice. The next few weeks are a blur of emotions, pain, constant tears, anger and darkness. The results came back and my left breast had no sign of cancer. It was totally healthy. My right breast ended up having a 13cm growth. The MRI only noted a 2cm lump. I was told you have Stage 3 breast cancer!! What the??? This is the scary part about Invasive Lobular Carcinoma (ILC).
Then came chemo, multiple hospitalizations due to chest infections, bowel infections, blood clots, pneumonia etc. I couldn't complete my 16 rounds of chemo as I was too sick. Chemotherapy was followed by 25 treatments of radiation. I personally felt this was worse then chemo. Being left alone in a cold sterilized room every day was overwhelming. I just wanted it to end. Then came the skin burns, the pain, more tears.
It's been one year since I finished treatment but I still feel broken. I have good days and bad, but will never be the same person I was pre-diagnosis. It's always in the back of mind, every ache or pain is a reminder. Will it come back? I've read that ILC can be just as difficult to detect if it metastasis as it grows the same way. Nobody ever told me about ILC. I thought I was safe because I was having mammograms.
After telling my work colleagues I would see them in three weeks, it was nearly 12 months before I returned to work.
Life is so different now. I wish someone had told me about Invasive Lobular Carcinoma a long time ago.
Breast Cancer Network Australia (BCNA) is Australia’s leading breast cancer consumer organisation. For the past 22 years, we have worked tirelessly to ensure that all Australians who are affected by breast cancer receive the very best care, treatment and support.