Invasive Lobular Cancer (ILC)

I was nodding my head whilst reading your post, @EAA  -  my own lobular was totally missed by mammogram 4 months prior to the tumour discovery by my GP.  My mammogram was recently re-investigated by BSNSW BreastScreen NSW) and they told me that their 'new' investigation also showed I didn't have breast cancer (a real surprise to my surgeon & the pathology team, I can tell you!) 

Personally, I would think that MRI/other scans should be automatic from early on - as a full detection tool/comparison tool for later on.  It is ridiculous that they should be 'guessing' at what is happening now ...... when they can already know, quite easily!

Like you, I am not happy to sit here & wait for something to happen 'badly' further down the track - I would rather proactive monitoring, to catch it early, cos let's face it - we all have a damocles sword hanging over our heads as it is!!

Do you come from a medical background yourself @EAA?   Your comments are very well put together & have an air of 'assurance' about them!!  ;)  

take care xx

Thanks Berry for the lobular breast cancer web site. Extremely helpful. I'm wondering if anyone had thoughts on scans for 
Surveillance at the end of five year therapy? I've had two mastectomies with contralateral breast cancer. The second tumour

Many thanks berry 💗

https://lobularbreastcancer.org/ ; American, is the only organisation that is especially dedicated to invasive lobular cancer, American. A lot of information including audios from concerned researchers and informed doctors. Lobular cancer has no binding protein thus doesn't lump together, its a single cell cancer and is detected as a mass not a lump. Your radiation will go well;different department, mine was fine.  kindly B

Gosh - @berry what a ride. I am scared now - am being treated at Monash for most things but Peter MAC for radiation. 
Still haven’t started rads and it’s been I seem to be losing a bit of faith in the system. How are you finding anastrizole? I am sad about your hip :( must be dreadful.
thank you for posting about lobular- it’s slim pickings out there - as is anything about bilateral synchronous 

best Cash 

Thanks Cashbrown , I had 13 lymph nodes removed and fear it has metastasized to my hip which is common for ILC.  I am thinking of changing fro the Peter Mac Cancer where quality control is poor to Olivia Newton John Cancer Centre where hopefully they are switched onto ILC. I am on Anastrizole. kindly B

Hi- I had surgery for what was picked up in mammograms, MRI, ultrasounds and pre op biopsies for stage 1 Lobular 1.2cm in left and DCIS 1cm in right breasts.
Post op biopsy revealed left turned out to be 2.2cm grade 2b  and had spread to 1 lymph node - they removed 8 nodes.

right turned out to to be 2.5 cm grade 2a and after a second excision fi ding lymph nodes clear, the chemo question came up. This was a big surprise for me.

my onc said that they would def recommend it for me - but to be sure, I paid $3000 for and Endo Predict test.

was a test I am pleased to say I failed so no chemo -

just AI (anastrizole) as I am Post menopause and am still waiting for a radiation plan as a tennis ball sized seroma is slowing things down.

waiting and waiting and delay after delay is really shit.

it seems the chemo advantage for stage 2 lobular is lower than for ductal, but a genetic test is possibly best indication.

its just sad we have to pay for it! 

Hope this helps
best
Cash 

Looks like new diagnostic  tools are needed.  IIts a single cancer cell which lacks a binding protein hence no lump. I would be interested in examining statistics on the % of ILC a 3d mammogram picks up, it would have to be better than 10%. With little symptoms , its good your doctor had foresight to order an ultra sound. My cancerous stream was 5cm which was a good part of half the breast. 

My ILC wasn't picked up by 3D mammogram - only by a long and exhaustive ultrasound. The surgeon recommended chemo before surgery but the oncologist said it would be a waste of time for a large ILC. So I refused. My ILC was 12 cm. I had chemo after surgery.

thank is really good Brenda5, that both cancers were detected early.