Hi from me, another ILC.
I was diagnosed late 2010 with bilateral ILC, biggest on left was estimated around 2cm. Was recommended a bilateral Mx with immediate recon, but then had SNB which came back clear, so I decided I'd hang on to them for a while yet. Even after the Bilateral WLEs which found another 3mm one within the margin of the biggest which was 2.2cm.
Contrary to what most people would do I know, but I focused on the most recent research which mostly concludes that ILC has no worse, and can have better outcome than IDC as it responds well to hormone therapy. And most studies say that prognosis is based on biggest tumour, not total tumour load. Also liked Susan Love's position that around 40% of removed breasts will have multifocal spots somewhere and the radiotherapy is good at cleaning these up, and I had rads on both sides. I didn't have chemo as this wasn't recommended - which I found a bit odd when you think.
But to give me a bit more peace of mind I also had the Oncotype DX test done, expensive, but I really wanted to be reassured that my situation wasn't as serious as they'd have me believe. Results came back low risk of recurrence on both sides, so I do sleep at night.
Susan Love also says lobular can be result of 'complicated hormonal history' - I had endometriosis, on pill for years, had unsuccessful fertility treatment, then went on HRT at the first sign of a hot flush, so I like to think its all those hormones that did it, and now they're being sucked out of me at a great rate by letrozole, I should be fine. What an optimist I am!
Maybe a bit of denial, but I feel OK with my decision. I do hope you all get to the peace of mind point.
S
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