Day 27 #LivingWithLobular

Donna’s Story

Donna was Diagnosed with Stage 3c Pleomorphic Lobular cancer just after her 40th Birthday

In 2018 I noticed my left nipple discharged a milky like substance while I was towel drying after my bath. I absolutely in that moment knew I had cancer. I booked in for a consultation and was sent for a mammogram. I was told the scan was clear and not to worry. I wasn’t offered an explanation or a call back appointment. I asked on numerous occasions for a follow up but as the discharge had stopped 8 months later I was told it was unnecessary. 

In March 2021, the day after my 40th birthday, I found a lump in that breast. I called my GP. Was told it was a cyst, was referred back to the breast clinic and after an 8 week wait was diagnosed with cancer. Following a double mastectomy I was told I needed a second surgery as the cancer was in my node biopsy.

In July I saw my oncologist for the first time who said the words, “pleomorphic lobular cancer, grade 3”. It was the first time I had heard this. I had no idea what Lobular Cancer was. I wasn’t offered any more information in relation to how it was different to the 2 Ductal tumours I also had. I still haven’t been offered any information on this specific subtype of Breast cancer or why it should be treated differently. I find myself telling surgeons and consultants why it’s different.

I know now why the cancer wasn’t picked up in 2018. I had dense breasts. Something else I was never told.

If I’d known then what I know now, thanks to the love and support of Lobular Ireland, I would have insisted on a follow up. My heart breaks just thinking about the “what ifs“.

I went through 2 different types of chemotherapy, followed by a year of herceptin. I’m now on endocrine therapy for 10 years and beta blockers for life due to cardiac damage from the chemo. I have long lasting effects from treatment in the form of pain, anxiety, insomnia, restless leg, neuropathy and tinnitus also.

A lot of people tell me I’m coming across as negative when I tell my story and that I should find a positive “spin”. I absolutely do not agree. People deserve to know the truth about their own bodies and the truth about what cancer is. You can survive. You can thrive after. But you will be changed.

If I was to look for positives in my story I’d say I learned patience, I learned to be less angry at life, and I learned the importance of “the breath”. 

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