Home Groups Invasive Lobular Cancer (ILC)


Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,506
Hello everyone, 

Welcome to this new group.  As discussed we have set up this new group for members who have been diagnosed with an invasive lobular cancer as a point of connection, for peer support and for sharing information and resources.  As you can see I have invited some of you to join this group, please if you know of anyone else who has been diagnosed with lobular cancer, please encourage them to join our online community.


  • SisterSister Adelaide Hills, SAMember Posts: 4,528
    Thanks @Giovanna_BCNA Now I get what you meant by the link.  I hadn't noticed the new announcement post.
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,392
    Thank you for inviting me. Something I don't think I ever explained was I was on the contraceptive pill most of my life to keep my periods regular. About 15 years after my children were born I was still semi lactating and I went to my local dr to see what could be done. He sent me for a mammogram and ultrasound of my breasts and while no bc was detected, he couldn't explain the lactating and said I would just have to live with it. One side could express white, and the other non cancer side would express green. After my bc treatment and no more contraceptive pill there is no more lactating. Beats me why the dr didnt blame the pill and take me off of it. I might never had gotten mixed ILC/IDC bc.
  • Patti JPatti J Member Posts: 589
    When I had stage 1 breast cancer it was invasive ductal carcinoma.
    Now that I have metastatic breast cancer it is invasive pleomorphic lobular breast carcinoma. This is supposed to be rare. 
  • SisterSister Adelaide Hills, SAMember Posts: 4,528
    Yes, we keep getting told it is supposed to be rare but my onc's response was that he sees an awful lot of women with it.

    20 years ago, I was on the pill for a short time and within a couple of months found a lump in my right breast.  Cystic action.  Move on a few years and my second baby really didn't like feeding on that side but no lumps or bumps.  13 years later and I get diagnosed from a screening with pleomorphic ILC in that same breast and in the same quadrant as the earlier cyst but apparently all just coincidence.  While the medicos are probably right, I can't help but wonder if those earlier incidents were a sign that something wasn't right - perhaps some propensity towards it.  Who knows?  Irrelevant for me, now but...
  • Patti JPatti J Member Posts: 589
    @Sister. Does your oncologist see a lot of women with the pleomorphic variant?
  • SisterSister Adelaide Hills, SAMember Posts: 4,528
    Not so sure about that but he certainly doesn't seem to think ILC is particularly uncommon.
  • EAAEAA Member Posts: 85
    Thanks Gionanna for starting this group. My second primary Invaasive Lobular after Ductal. Thanks to the US website suggested on 
    treatments forum ,  I have been very informed it being a discrete tumour differing from ductal.
    I was happy i got myself back onto Arimidex rather than continuing Tamoxifen, when I read Lobular responds better to Ai’s.
    As my Onc dismisses any discussion with me to continue with extended therapy after next year.. even for another two years,
    Im about to see my fourth onc!!!! This time in the private sector to see if i can get the level of early detection surveillance
    id like.. One missed tumour was enough for me to keep searching for an onc who respects my underlying disease pathology.
    Thanks sisters in the treatments forum for being a guiding help to me... This time I’m going to ask the onc, that after five years an MRI
    and biomarkers would be appropriate. All my Oncs have been therapeutic nihilists! Do nothing until the next event happens!
    I hope, next weeks encounter will see me giving up 5 years of traumatic agitation in the public sector with missed diagnosis from
    Emminent professors. Their research didn’t obviously cover my category!.. Very very grateful for BCNA sisters.. hopefully getting 
    on track.... Thanks all....\

  • berryberry Member Posts: 66
    I too had cysts at the same o'clock  where I got ILC.  
  • arpiearpie Mid North Coast, NSWMember Posts: 3,734
    edited August 2019
    Thanks for the invite, @Giovanna_BCNA .... I finally made the it!

    I had cysts back in my 20s and was told I had ‘lumpy breasts’ and now assume it meant ‘dense breasts’!  I had a major call back from a bus mammogram to go to John Hunter Hospital in Newcastle about 10+ years ago for more diligent testing.  I was on a hormone cream at the time to combat severe menopause side effects and they thought it was the testosterone in the cream that caused the abnormal breast mammogram reading.  I stopped using the cream immediately.  No more call backs. 

    I was never made aware that having dense breast tissue would compromise my mammograms by NOT identifying tumours (particularly ILC!).

    It is imperative that BCNA continue lobbying every state’s  Breast Screening program to advise their clients of their ‘breast type’ on their very first mammogram, as WA currently does.  Even more so in rural areas, as the mobile buses only have the older 2D mammogram machines, not the more modern 3D/tomosynthesis that are available at many city centres (not all of them tho!)  Those rural clients with dense breast tissue need to be advised to have a precautionary ultrasound as the older machines have no chance of picking it up until it is way more advanced and possibly Stage 4.  Rural patients are literally being thrown under the bus.  My own tumour was found totally by accident by my GP just 4 months after a ‘clear’ mammogram!  Up til then, all my mammograms had been via the Mobile Bus Scheme in rural towns.

    I’ve contacted Breast Screen NSW regarding these oversights numerous times.  Both the dense breast issue and the inadequate screening on rural mobile buses. I realise there are funding issues re the 3D on buses  - but there is no excuse not to advise on a simple life saving procedure - as long term, a precautionary ultrasound finding an early tumour would be far less traumatic for the patient and ‘Money saving’ for the Gov, with a less invasive procedure hopefully not requiring chemo etc, if found early enough.

    Jumping off my hobby horse now!  ;) 
  • berryberry Member Posts: 66
    As of 2018 Breast Screen Victoria was still using 2d mammograms. This is a Federal Funded organisation - an arm of the Federal Health Department, 3d mammograms should be available across Australia. 3d Mammograms have never been allocated in the federal budget  either.

  • EastmumEastmum SydneyMember Posts: 489
    edited September 2019
    Having joined the Facebook group I posted about, I've been totally blown away reading the dozens and dozens and dozens of posts from women - mainly in the USA but all over the world - who have had an ILC breast cancer diagnosis after years of seemingly normal mammograms, ultrasounds and MRIs. The majority of them complained about changes such as thickening, architectural distortion etc for a long time prior to diagnosis. The majority of them were stage 3 at diagnosis. Just like me! NAD on MRI and ended up finally diagnosed with bilateral ILC and a 16.8cm tumour in the breast that looked normal - not even the distorted one! 

    I thought that I was well versed in Breast Cancer awareness before I was diagnosed. I checked regularly. I had regular scans. I thought I knew quite a bit. I did know about lumps and I did know about cancer in ducts. I had NEVER heard of lobular cancer. I'd never heard anybody talk about it and I'd never seen any education about it amongst any breast cancer education I was exposed to.
    There is simply not enough awareness about ILC - you never hear about it in the media. People are still focused on looking for lumps - there's just not enough information out there about the less common signs of breast cancer - @Silverlining I hear you loud and clear! @arpie you're spot on - there is so much lobbying still to do!

    We need to get more information out there.

  • SisterSister Adelaide Hills, SAMember Posts: 4,528
    I've been starting small by talking to friends and colleagues about screening and looking for things other than lumps, as well as posting on fb.  I never knew to look for anything else either but was so lucky that the screening mammo picked something up.
  • LIttleBlueWrenLIttleBlueWren BrisbaneMember Posts: 75
    Mine was invasive lobular with one tumor being pleomorphic and the others classical. I asked my surgeon if the cancer would have been there on my previous mammogram and he said most likely (it was done 18 months before my diagnosis).
    The surgeon described the growth of the lobular tumor as more like a piece of straight cotton thread where you need a lot of them before you can feel them rather than the ductal tumors that tend to grow in more of a clump. This seems to explain why the lobular takes longer to detect.
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