Day 19 #LivingWithLobular

I’m Jean Anne. I live in Galway and was diagnosed with lobular breast cancer at age 52 following my second screening mammogram with Breastcheck.

After initial lumpectomy surgery I was found to have multifocal ILC which required 2 further surgeries – four smaller tumours were discovered on pathology after surgery (undetected on mammogram and pre surgery MRI) 

With an Oncotype of 24 I was spared chemotherapy. 

I had radiation therapy and am on tamoxifen now for 3 out of 5 years…I’m counting down the final 24 months as I have a lot of persistent side effects which are painful/frustrating/annoying and I sometimes wonder if I’ll ever get back to feeling like my old self. 

Jean Anne Davis

I am concerned always about the threat of recurrence especially given my lack of confidence in a yearly mammogram picking up lobular at an early stage. I’m also disheartened at the state of oncology outpatient services in Galway (cancellations/delays/lack of in person appointments) and the inconsistency and inadequacy of follow up screening for ILC patients. 

I hope for a future where national follow up protocols recognise lobular as a distinct sub type of breast cancer, which may require additional more effective scanning, and a breast cancer specific oncology center of excellence in Ireland. I would be more than happy to travel to get lobular specific knowledge and care!

I have made some positive changes in my lifestyle that have definitely helped me – the biggest being practicing yoga and sea swimming almost every day. When I’m awake with hot flushes or my joints ache in the mornings I just think…wait for it, wait for the shock of that sea water…I regain control of my body when I step into the waves…and I know NOTHING will be on my mind except the sea the sky and the ever changing view of the Burren across the bay. It’s the ultimate in mindfulness!

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