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An interesting Youtube video on ILC

arpiearpie Mid North Coast, NSWMember Posts: 4,925


  • MazbethMazbeth BrisbaneMember Posts: 155
    Thanks @arpie for putting it up - you always have great information 🙂
    I was diagnosed with ILC exactly one year ago and I am trying to educate myself as clearly it is quite a different beast. I am realising very quickly that hindsight is powerful - I was told about my dense breasts, polycystic issues etc. I then consulted a breast surgeon in May Of 2019, as I was advised to consider more screening and consider taking tamoxifen as a prevention. As I had clear screening in February, it was decided that I would commence MRI screening in 2020 😞. I found a kind of thickening and went and had it checked and the rest, as they say, is history. So, here I am. This is really the first time I have put it in words what has happened - it took me a while to come to terms with everything - and a bloody pandemic thrown in - made for the perfect storm. I had neo-adjuvant chemo as the size was showing at about 5cm in one breast. I decided immediately that I would have a BMX. I handled chemo pretty well, then had the surgery. The wait to have the surgery was hard, as by that stage I had learnt that ILC does not screen accurately so I was not confident in the US and MRI. However, my nodes were clear and the area of ILC was a total of 4.8cm with clear margins. I have since completed reconstruction and had my 1 year US - clear 😀 I decided, with the support of my oncologist and surgeon that I wasn’t going to have radiation - I was the ‘grey’ area according to my rads onc. His words were, ‘I am comfortable for you to have radiation and I am comfortable for you not to have radiation, it’s your decision’. Wowsers - I thought I would get something a bit more definite than that. I am now on Femara. 
    Thanks so much for your posts, they are always helpful. I love the funnies too!
    Take care, M x
  • arpiearpie Mid North Coast, NSWMember Posts: 4,925
    Hi @Mazbeth - wow - you've had a tough time of it!  Well done on making it thru, with your sense of humour intact!!  

    Yes, I think they are finally realising just how much different ILC is to any other form of BC .... but the dense breast tissue is the most obvious reason for it not being diagnosed on Mammograms, hence either the US or MRIs needed to do so accurately!  I had a clear MG just months before my GP found it 'accidentally' when I went in for a Pap smear!  She said - I may as well check your boobs at the same time .... and found it!  SO MUCH FOR THE MAMMOGRAM!!  grrr

    I watched this back when I found it - but don't for the life of me, expect to remember any of it!  My brain is scrambled & I can't even blame chemo - I didn't have it!

    Wishing you all the best for Xmas, take care xx

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