Invasive Lobular Cancer (ILC)

berryberry Member Posts: 58
edited May 13 in General discussion
Hi all,  I have just discovered that ILC is lumped into general ductal breast cancer. America research have started to recognise there are huge differences. Treatment in Australia is the same as ductal cancer and even the metastasized areas are generally different to ductal cancers.. Australian research and recognition is way off. Does anyone else who has/had ILC been misinformed?  kindly  Berry


  • arpiearpie Mid North Coast, NSWMember Posts: 3,022
    Hi @berry

    Sorry to see you are here - I am guessing you've been diagnosed with ILC and already had your surgery/treatment - chemo and/or Rads, then tabs?

    I had my surgery in Jan 2018 after being diagnosed with ILC.  ILC is harder to detect than Ductal or other BCs due to the nature of the lobules hiding the cancer - and if you have dense breast tissue as well, it is even harder to identify just by mammogram, so the ILC can be more advanced when finally found.  Mine was found by accident by my GP giving me a random boob test, just 4 months after being given the all clear from BreastScreenNSW.

    I've not heard ILC & general Ductal Cancer being mentioned in the same treatment options - but others may have. 

    Was it a health professional who told you this, or did you see it online?

    I hope all is going well with you
  • youngdogmumyoungdogmum Gold Coast Member Posts: 201
    Hi @berry
    Unfortunately no this isn't news to me as I researched quite extensively when I was diagnosed...My Oncologist did discuss with me how ILC doesn't always respond as well as IDC to chemo, however was told that given my age (27) there wasn't really any decision about going ahead.

    As far as I am aware, yes the US is pursuing a lot more research into this but there still isn't a defined treatment pathway for ILC yet..perhaps in the future there will be one differentiated from IDC. Given that almost all ILC's tend to be very hormone positive hormone therapy seems to be the big differentiating factor in terms of needing to comply with med regime (from what Ive read..Ive not yet started hormone therapy but have been advised 10 years). 

    Yes the areas it metastasises to are also generally different so something to be mindful of, I imagine most GPs don't know that so educating your GP to help follow up concerning symptoms might be necessary.

    Have you visited the US lobular cancer website? I imagine you have :) Its very good.

    Hope you are well in your treatment
  • berryberry Member Posts: 58
    Thanks Arpie and youngdogmum for your replies. My doctors at Peter Mac were pretty dismissive of my ILC so I assumed that long term prognosis was good. Now after reading FRED HUTCH website, I am being to think that they are verging on incompetent. Lobular cancer is better picked up by a 3d mammogram. To date they haven't bothered to 3d mammogram my other breast. In addition they recommended immediate relatives have ordinary mammograms, not 3d mammograms. Also Breast Screen Australia should replace their mammogram machines with 3d mammograms. Around 10%- 15% of the female population are neglected; these screenings are useless and can women a false sense of security. Its not good enough. Anyway I wish you both successful long term remission.  kindly  Berry
  • arpiearpie Mid North Coast, NSWMember Posts: 3,022
    Is this the article @berry ?

    I agree re needing 3D tomosynthesis in all centres AND Breastscreen busses ..... but also suggest Ultrasound as well for a more definitive 'pick up' of tumours (particularly if you know you have dense breast tissue which 'hides' the tumours as both present as 'white' on the Mammograms.)  On Ultrasound, they show almost as 'pockets' and more readily identified.

    That is ridiculous if they haven't checked your other breast once you've been diagnosed!  Definitely - both breasts should be given the same scan treatment - make sure 'bilateral' is on any MG & US scans.

    But currently, only BreastScreen WA actively advises it's clients if they have dense breast tissue & the dangers this presents in picking up tumours with mammograms.

    All the best with your own treatment -  xxx
  • berryberry Member Posts: 58
    thanks arpie. I think things should change and I am in the mood to canvas change with or without help from representative bodies. kindly berry
  • SisterSister Adelaide Hills, SAMember Posts: 4,355
    I think most oncologists recognise the difference - in fact mine told me that the online predictive thingies are very little use for ILC as they are skewed so much toward IDC and the results won't be reflective.  They know it behaves differently but unfortunately, it is still very much understudied as a different type.  There is a conference happening soon in the US which is about ILC and the advocacy group there have a webinar on this week - I've posted a link up here on another thread but let me know if you can't find it.  From memory, it's in the very early hours of Thursday morning.
  • berryberry Member Posts: 58
    My oncologist at Peter Mac is a professor, Sister. She never discussed that there was any difference with me and that chem may be dodgy. I am going to search PM's information library to-day. 13 lymph nodes were removed so the odds that the cancer  has metastasized is high. The only follow up explorative imaging is a 3d mammogram is in 6 months. I have asked this site to set up a link/forum for women with ILC.    kindly berry

  • kmakmkmakm MelbourneMember Posts: 7,519
    Hi @berry. When I went to BreastScreen for the routine mammogram I was asked to be part of a study looking at 3D mammograms vs 2D mammograms. I was happy to do that. I was randomly assigned to the 2D machine.

    At my callback I went straight into the 3D room which told me the very obvious story that the images are better from that machine. I would imagine they all know that but that cost is a factor.

    I think you're going to have to make a bit of noise and possibly pay to have your other boob scanned. Probably worth it for peace of mind. K xox
  • youngdogmumyoungdogmum Gold Coast Member Posts: 201
    I’m not sure if I’m understanding correctly... have you not had the opposite breast mammogrammed at all? Surely that’s a given at work up when diagnosed as ILC has a higher chance of being contralateral instead of unilateral? 
    I ended up asking my GP for a breast MRI @berry, my surgeon didn’t think it was needed but I wanted peace of mind as my opposite boob very young dense lumpy tissue.
    I listened to a presentation from the US lobular group recently and they said MRI very useful to ILC if available to the patient (cost, regional location etc are factors hindering this). Note not everyone gets these due to such factors/doctor preference. 
    I would insist on having a mammogram at a minimum if it were me. 

    Take care 
  • berryberry Member Posts: 58
    I will have a 3d mammogram youngdogmum but I have a port(veins very poor) very near to that breast. A surgical appointment will take months to have it removed. I have only just discovered the poor prognosis of ILC. I surrendered to Peter Mac's expertise and I am realising what a bad judgement call I made.
  • youngdogmumyoungdogmum Gold Coast Member Posts: 201
    @berry, you seem down about our diagnosis.
    I hope to share some light that it’s not as negative as you seem to think it is..

    Of course I don’t know your personal diagnosis and circumstances, but there’s plenty of women who have had stage 1 IDC and go on to develop stage 4 and then others with almost the exact same cancer in terms of size/staging who don’t. 
    Why does one survive for 25 years and one for 3? Very difficult to say and unfortunately science isn’t there yet to tell us. 

    Yes as per literature ILC has a tendency to come back later than IDC, but you must remember those women these studies are talking about were treated 10-15-20 years ago, and the treatments have improved since then. 

    I really hope I don’t seem to not understand your concerns, because trust me I do. I’m 27 of course I want to think I’ll be here in 30 years still. Having ILC doesn’t automatically mean we won’t be.. 

    I hope some of the other more seasoned lobular women come on and add some more light, particularly regarding Peter Mac
  • berryberry Member Posts: 58
    thank you youngdogmum, such wise words.  kindly  Berry
  • primekprimek Broken HillMember Posts: 5,133
    @Zoffiel you might have some insight on ILC
  • berryberry Member Posts: 58
    thanks primek
  • SisterSister Adelaide Hills, SAMember Posts: 4,355
    One of the issues with ILC and prognosis is the way that it presents.  As it can be hard to detect, it is often more advanced than IDC when it is picked up.  Also, it wasn't always recognised as a distinct type of cancer so it's behaviour is not as well known - combine that with the numbers affected (depending on what you read, 5-15% of breast cancers), means that it doesn't have the same body of knowledge behind it.  That said, my oncologist reckons he sees a lot of women with ILC so maybe not as uncommon as reported in the literature.  And as @youngdogmum has said, much of what you read on Google is old information.  I'm sure @zoffiel will have more to say.
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