Invasive Lobular Cancer (ILC)

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.

https://lobularbreastcancer.org/lbca-share-education/

In case you couldn't find it, this is the link for the information regarding registration for the webinar later this week (16th May at 2:30am ACST)

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

thank you Sister, I will contact her soon. 

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.

thanks primek

@Zoffiel you might have some insight on ILC

thank you youngdogmum, such wise words.  kindly  Berry

@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

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.