Putting A Face To Lobular Breast Cancer

This week I am delighted to give a heads up on a new October Breast Cancer Awareness initiative.

When I was diagnosed with Breast Cancer in December 2015, I had no idea that there were many different types of the disease. I received advanced word of my Dx by phone, at work (not ideal I might add). I zoned in and out while I stood in the school caretaker’s shed, noticing how extraordinarily organised it was. I know I missed some bits but I will always remember the salient parts of that phone conversation.

The words Breast Cancer hung in the air followed by Oncologist Chemotherapy, Mastectomy and the odd sounding Lobular thing.

In the weeks that followed I ventured to find out as much as I could about Invasive Lobular Breast Cancer. It’s over 4 years ago and it was quite shocking to discover that there was little information specific to my particular ‘flavour’ of Breast Cancer at the time. ILC (12 – 15%) had been treated just like the more common Ductal (80%) of all Breast Cancers. It’s important to tell you all now that Lobular Breast Cancer is not the same as Ductal.

A Lobular tumour tends not to disturb the surrounding breast tissue, it grows in single cell formation and doesn’t generally form a lump because it lacks a protein called e-cadherin. Lobular Breast Cancer is more difficult to detect on standard Mammography and therefore is often diagnosed when the tumour is larger and at a late stage. It displays contralateral features, meaning it very often is found in or can spread to both breasts. Patients express real concerns about the lack of appropriate Screening for Lobular too, given the typical ILC growth patterns and unusual Metastatic spread to areas like Liver, Ovaries, Colon, Omentum and Peritonium.

Treatment protocols for Invasive Lobular Breast Cancer are improving. Research has contributed hugely to this as more and more is discovered about the biological and pathological features of this unique subtype of Invasive Breast Cancer.

Patient Advocacy groups also have had an important impact as they succeed in working closely with Lobular Researchers to enhance education and awareness of ILC. Unfortunately there are not nearly enough Lobular specific Clinical Trials. Many Breast Cancer Trials to date have not considered ILC, although ILC is the 2nd most common type of Breast Disease.

In October – as part of Breast Cancer Awareness and with your help, Lobular Ireland want you to help them to ‘Put A Face To Lobular’

If you’ve been Diagnosed with ILC  –
Invasive Lobular Breast Cancer, please consider joining in this campaign, you can support them as a friend or family of someone who’s had Lobular too. It’s easy.

Email them PutAFaceToLobular@Outlook.ie

They would love you to send your photo, name, location and date of diagnosis in to them by Weds 23rd September.
It might be during or after treatment, a holiday, a favourite place, your happy place, wig on/wig off, they want you to put your ‘personal stamp” on this – and ask you to use #IAmLobular or #LivingWithLobular with it.

They’ll share photos on FB and on their Twitter page each day in October along with Daily Facts about Lobular Breast Cancer.

Lobular is my particular type of Breast Cancer. I am a founder member of Lobular Ireland and I’m really passionate about raising awareness for it.

I am also the Irish Patient Advocate Representative for the European Lobular Breast Cancer Consortium

The Lobular Community benefit hugely and are greatly indebted also to the Lobular Breast Cancer Alliance who have enormous expertise and the most extensive data bank of evidence based Lobular specific information for patients and clinicians.

Thank you for sharing. Siobhàn x


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