Invasive Lobular Cancer (ILC)
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 ducta...
Forum Discussion
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
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