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

Hello everyone,We have been reading this thread with interest and thank you all for your feedback and comments. The team at BCNA have been in discussion as we have also received some emails regarding ILC. We are currently following up a few different channels and are in the process of formulating a coordinated plan and will keep you posted via this thread.

I can't see the point in getting too stressed about it. It will get us, or it won't.BC version 1 in 2006, I didn't get told that chemo wasn't as effective for ILC. I wasn't told in 2016 when BCV2 came along either. Nothing about it coming back later compared with DCIS. No information about the difference at all. In 2006 the online environment wasn't what it is now and by the time I'd finished treatment I just wanted to get on with my life. Yes, I'm better informed now, but I still have ILC so I have to wonder if I'm any better off. I thought that when I reached the ten year point I'd dodged the bullet however I've always been pretty fatalistic about my disease so wasn't that surprised when it came back, just mightily disappointed.Would have knowing more made any difference? Realistically, no. Was I pissed off about being under informed? You betcha. Would I embrace a program of more intensive screening to find out what it's going to do next--and there will be a next time--probably not.As with every cancer with lower incidence, it gets a proportionally lower amount of funding. That's just the way the world works. Talk to someone who has a child with a rare cancer...There are certain drivers for research and dedicated projects looking at ILC are scarce.None of us sign up for this and there are good reasons to be worried about our futures. The options are limited; either get heavily involved in advocacy campaigns to raise awareness and funds, or push it as far out of your life as is practical. A personal choice. Mxx

Be aware there are differences within ILC. For me, mine was picked up on a general screening mammo as I had no symptoms. It turned out to be pleomorphic which, I have been told, means that it grows pretty damn fast and may have only been there for 1-2 years. As it was ILC, it was incredibly hard to see and my surgeon was amazed that the irregularity was spotted. I booked the screen because I was ticking things off. If I had gone a few months earlier or a few months later, the story may have been quite different. It's not so many years ago that no-one realised that ILC was a distinct BC. I think it's important to push for better recognition and, therefore treatment. It's also important to realise that these things are only becoming known as we go along. According to my onc, there is going to be an explosion of knowledge in the BC world within the next 5 years to the point that they will be looking at current treatments as "stone age" - there is that much happening and he has already seen it with lung cancer and melanoma. I am sorry for those who don't feel confidence in their medical team and I totally agree that if you don't, you should find someone else. I do trust mine but I know they are limited by what is currently known and available.

Yes, in the end it is what it is. I want the magic wand but there's no guarantees. New treatments and better understanding of cancer is happening at a faster rate than ever before. We can only hope that we will benefit from it and make noise if that's what you choose to do.

Good luck getting BreastScreen to listen to anything their 'consumers' have to say. Ask @arpie and @JJ70. It's like banging your head against a brick wall...

Invasive Lobular Cancer (ILC) | BCNA Online Network

89 Replies

Sister
Member
7 years ago
Not being in Victoria @berry, I haven't heard the advertising.
berry
Member
7 years ago
Haven't heard any media warnings on drinking and breast cancer recurrence but have heard Breast Screen Victoria's advertising knowing lying to Victorian women. When will they advertise the facts. I think I will make a complaint ACCC on misleading advertising except I can't remember which media I heard it on. I promise myself to pay attention rather swear abuse at those lame ducks.
EAA
Member
7 years ago
Hi Berry
Retreat sounds great..much calm
kmakm
Member
7 years ago
@EAA Noted.
berry
Member
7 years ago
I am not going off hormone blocking since its the only drug ILC really responds too. Apparentantly eggs are good for eye health since they have the same enzymes that your eyes have which protect eye vision. A women on the American FB page had a picture of her hair growth after 3 months and it was similar to mine, knowing that has quietened my anxiety. To find out the total effects of oestrogen suppression it will be dr google for me after I get back from my week at a buddhist retreat. 2 degress at night and 7 during the day. ouch. kindly-a possible frozen berry. lol
EAA
Member
7 years ago
Thanks Giovanna. hi Berry..Ive noticed my hair has thinned since being on Arimidex.
It doesnt fall out just seems to retard thickness. I havent noticed it affects other hairy
places on my body.I havent had bald patches.The question may be " How does oestrogen
affect hair follicles? What other parts of the body are affected when oestrogen activity is suppressed?
Definitly eye health. May also be compounded by the drugs you had on chemo?
Itd be a great question for the webcaast on June 6 re Hormone Blocking Therapy and its effects
on other organs in the body especially skin, Hair, eyes. Love your discussions and knowledge.
berry
Member
7 years ago
this is slightly off ILC's impact but my hair is really slow growing back. Finished chemo the end of Feb and barely have 1cm.
anastrozole - Al- can cause bald spots. Can it also cause slow hair growth? I want to see the old me when I look into the mirror not the ex- chemo sap.(didn't tolerate chemo).
Giovanna_BCNA
Member
7 years ago
Hello everyone,
We have been reading this thread with interest and thank you all for your feedback and comments.
The team at BCNA have been in discussion as we have also received some emails regarding ILC. We are currently following up a few different channels and are in the process of formulating a coordinated plan and will keep you posted via this thread.
Sister
Member
7 years ago
Sorry, I meant that there was something in the webinar about the stats around letrozole and ILC...
EAA
Member
7 years ago
Oh! I love raw honesty .. great comment berry!

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Invasive Lobular Cancer (ILC)

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