Day 26 #LivingWithLobular

Deirdre’s Story, October 2022 – Lobular Breast Cancer Awareness with Lobular Ireland

Today’s post is a little different in that it’s not from someone who has Lobular breast cancer. Today we hear from an amazing young woman and now friend of Lobular Ireland. Tammy wants to raise Awareness of Invasive Lobular Breast Cancer and the circumstances leading to her Mum’s De Novo diagnosis of ILC. Tammy’s Mum, Deirdre is no longer in this life, but here’s her story in her Daughter’s words.

Deirdre and her daughter Tammy

Deirdre Strickland, my wonderful mother, was diagnosed with metastatic lobular cell breast cancer in April 2017 aged 59. Mam was very diligent with her mammograms. She attended every BreastCheck appointment and in fact encouraged all of her friends to do the same. She had issues with fibroadenomas (non-cancerous breast lumps that don’t predispose people to developing cancers) when she was younger and was always careful to look for any irregularities since then.

Mam became worried at the end of 2016 about how one of her breasts felt and appeared. She was experiencing pain and thought her that perhaps her fibroadenomas had returned. She was relieved to be called for her routine mammogram, thinking that the imaging would detect anything nefarious. Her results came back clear and she was delighted.

Deirdre believed her Mammogram results

Within a few months however, her energy levels dropped significantly and she started experiencing debilitating pain in her back and sides. She gave up on going to her art class and exercise groups. Worst of all, she struggled to tend to her beloved garden because she couldn’t get out of bed. She went to the GP about this and was given analgesic pain patches to tide her over. Eventually, she started swimming again, albeit much less frequently.

One day I joined her for a swim. I noticed that her swimsuit wasn’t fitting right and that her chest looked a bit mis-shapen. I asked her whether she’d asked the GP about what might be going on there and she said no because her mammogram had come back clear only months before. Surely she’d be told if something wasn’t right? Surely she’d be referred for triple assessment (as she previously had been when she had fibroadenomas) in a breast clinic, if there had been an issue?

Despite her protests, I forced her to go to the GP again. Her doctor sent her into the breast clinic 2 weeks later as an urgent case. She became increasingly nervous when several biopsies were taken (including one samples from under her arm) but she maintained that everything must be fine. I had an aching feeling in my gut that something was terribly wrong. A week after this initial assessment, we went back to the breast clinic together and were given the shocking news. She was handed a very general pamphlet on breast cancer by the consultant and his nurse. I will always remember her expression when they handed her that pamphlet; she was terrified and utterly shocked.

Initially the consultant thought she was a stage 3 patient, as her breast biopsy and a lymph node under her arm came back positive. After further imaging, we were informed that mam had metastases all over her body, particularly in her bones. It started to make sense why she’d been in so much pain. She immediately started a hormonal therapy and a novel high-tech drug which had just been introduced for metastatic breast cancer. She tolerated these very well.

What was less tolerable, were people’s reactions to her illness. ‘Stage 4?’ they’d say. ‘How could you have let it go that far?’. It was terrible. None of it had been her fault. She trusted that mammograms would tell her whether or not there was a problem and she believed the ‘clear’ results even though her breast didn’t look entirely normal.

She’d never heard about breast density and how mammograms aren’t as effective at detecting cancers in women who have dense or extremely dense breasts as she had. She also didn’t know that the type of breast cancer that she had (lobular cell), was also more difficult to detect than other forms of breast cancer via mammogram. Like many people, she’d never heard of breast cancer subtypes at all. There didn’t seem to be much information available about lobular cell breast cancer or how it is treated.

Deirdre was diagnosed with metastatic lobular cell breast cancer in April 2017 aged 59 years

My family and I became (and remain) very angry about how everything unfolded. Mam had tried to advocate for herself by always attending her mammograms. Had she known that her particular breast density was an independent risk factor for developing breast cancer and that she was therefore at an increased risk of having a missed diagnosis on mammograms, she would have gone to the GP much quicker. She might have caught her cancer at an earlier stage and mightn’t have had to go through round after round of chemotherapy and radiotherapy until she died in April 2021.

Right up until her death, mam lectured her family and friends to attend their routine mammograms and to always follow up with their GP just in case. She didn’t want more women experiencing what she had gone through. In 2020, I sent her an Irish Times article about how Siobhan Freeney was raising awareness about breast density and lobular cell breast cancer. Although she hated hearing that more women had gone through a similar ordeal to her, she was so relieved to hear at last, this wasn’t just something that happened to her. She wasn’t alone. This wasn’t her fault.

Though knowing more about lobular cell cancer and breast density ultimately didn’t benefit her treatment outcome or extend her life, I cannot emphasise enough how much comfort Siobhan’s story and her advocacy gave my mam. Knowing about what is going on in your own body is empowering, as is being part of a community. Finding out more about lobular cell and breast density made my mam want to raise awareness of these features amongst her peers.

As her daughter, I am committed to honouring her life by telling her story and raising further awareness of the different subtypes of breast cancer and how breast density impacts screening and diagnosis of cancers in Ireland. Changes must be made within our health system so that what happened to my Mam does not happen to others. Until this happens, I am committed (alongside Siobhan and the Lobular Ireland and Being Dense advocates) to providing clear and accurate information to people about their risks. It is the least I can do.

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