Lisa is 49 years old and lives in the West Midlands. She has been married for 25 years and has two sons aged 18 and 22.
I used to work as a Teaching Assistant but became a stay-at-home mom after the birth of my first son. But for the last 4 years, I’ve been working as a Lunchtime Supervisor in a local primary school.
I love to read, love making birthday cards, spending time with family and friends, visiting as many cafes as possible and going on walks with my miniature dachshund Toby!
In March 2022, I visited my GP with a thickening of tissue in my right breast. No lump – just a firmness that I hadn’t noticed before, slight dimpling of the skin and the occasional pain when I leant forwards. I was given a rapid referral to the breast clinic at my local hospital where I was seen 12 days later. Here I was given a mammogram, an ultrasound and a biopsy and sent to a waiting room. A little while later, a nurse called my name and asked if I had anyone with me. This was the first red flag!
A breast consultant introduced herself and took my hand. She said that from what she had seen from the mammogram and ultrasound it was best if I prepared myself for a cancer diagnosis. I think I knew this was what she was going to say but still, nothing prepares you for those words. I remember watching her mouth move and tears falling silently down my face. I was just stunned and couldn’t take in whatever else she was saying to me.
I walked out of that room with my mom having been told they would call me when the test results were in – these would tell me what type of cancer it was and what my treatment plan would be. I remember walking out of the hospital and looking at people who were chatting, smiling, laughing and thinking to myself, ‘what on earth do I do now’?
It was two weeks later when I was recalled back to be told that I had Invasive Lobular Breast Cancer, Grade 2, ER positive, HR positive and HER2 negative. None of this made sense to me at the time, but I was given numerous leaflets and spoken to in a side room later when I had gathered myself together.
The tumour was 39mm and I was told that as it was Lobular it grows in a different way to other cancers and that’s why it hadn’t presented as an actual lump. I was told I would need a single mastectomy and sentinel lymph node biopsy, possibly chemotherapy but definitely radiotherapy and hormone therapy.
The tumour was 39mm and I was told that as it was Lobular it grows in a different way to other cancers and that’s why it hadn’t presented as an actual lump.
I was told I would need a single mastectomy and sentinel lymph node biopsy, possibly chemotherapy but definitely radiotherapy and hormone therapy.
I had never heard of Lobular Breast Cancer. I felt really uneducated, and nothing educates you more than getting diagnosed. I read leaflet after leaflet and some breast cancer books to try and find out more about it.
My operation was scheduled for 3 weeks later, and I was petrified, but all went well. I was told all the cancer had been removed but they had found that it had in fact spread to one of my lymph nodes, which meant chemo was now a more likely possibility.
I did some research and found that not all types of Lobular Breast Cancer respond well to chemo, so at the first appointment with my oncologist we discussed this, and he agreed that we would not go down the chemo route. Instead, I would have 15 fractions of radiotherapy and 10 years of hormone therapy to include monthly Zoladex implants and daily Anastrozole tablets, which would put me in an early medical menopause.
I have to admit to being relieved at not needing chemo but still nervous about the other treatments and their side effects. I found radiotherapy fairly easy, except for being very tired and experiencing some radiation burns.
The hormone therapy though is proving tough … the joint pain is horrendous, my hair is thinning and I feel I have aged 10 years over the last 3! I am just so tired all of the time and could easily nod off in the afternoon, which just isn’t like me at all. I often feel like I am losing myself a bit at a time. However, anything that reduces the risk of recurrence I will put up with — what else can I do?
I look back on my experience so far and wish there was more understanding about Lobular Breast Cancer. I always – wrongly – assumed cancer is a lump. How foolish?
I can’t believe how naive I was as there are so many different symptoms of cancer, so many different types, so many different treatments — it’s a minefield!
I never knew that treatments differ depending on the type of cancer, whether you are pre-menopausal or post-menopausal, it’s not a one size fits all. I feel stupid even saying it out loud but it’s true, I was completely clueless.
I now tell as many people as I can my story and try to make them realise that you must listen and know your own body and get anything checked that’s not normal for you. If it means one person gets diagnosed before having to lose a breast or have invasive treatments that make life quite hard sometimes, then it’s worth it.
I am now on a waiting list to have my remaining breast removed so that I can live flat. Flat and fabulous, of course! Something else that I feel women should be aware of – I was constantly asked if I wanted reconstruction but never asked if I would like to live flat. If I had the BRCA gene, it’s offered as an option but not to women who don’t?
I have had to wait 3 years, have my decision approved by a psychologist and fight every step of the way to take back control of my body. Now there is a light at the end of the tunnel and I can’t wait. Cancer came into my life and turned it upside down, now I am going to turn it back the right way up.
