Invasive Lobular Cancer (ILC)

berry

thank you Sister, I will contact her soon. 

Zoffiel

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

Sister

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)

Sister

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.

youngdogmum

I’m hoping I’ll be awake for that conference I’ve got it scheduled in !

Trying to do some research into which hormone therapy is currently considered “best” for lobular... anyone been told anything in particular or read anything? 

berry

I  now belong to an American facebook for page for ILC and it seems that its based on pre or post menopause. Someone mentioned the post menopause hormone is best -Anastrozole. There are other anti estrogen pills they talk about. They also talk about subtypes of the cancer quote- Alpelisib called the solar-1 trial. This drug is supposed to help the kind of cells I have. I might be worth keeping uptodate with current knowledge- support for people with metastatic ILC.

Sister

Interesting webinar.  Apparently, a recorded version will be posted up on the SHARE Alliance site.

berry

I stayed awake but feel asleep while the dr was talking

youngdogmum

I was exhausted so will be looking forward to the webinar being posted. Exhausted because my MIL flew in from Scotland yesterday. What a pick me up it’s been !!

Sister

Some of it went over my head but may be in part due to the fact that I had a glitch with visuals at the beginning and the fact that it was 2:30am.  A couple of interesting points to come out of it were that there may be little advantage to having chemo with ILC but the doctor stressed that this research is still not conclusive and he definitely would not recommend for anyone to forgo chemo based on this.  He also said that current research points to hormone therapy being the most important part of post-surgery treatment for ILC with AIs showing more favourable long-term results than Tamoxifen for post-menopausal women (I'm sorry - I think I vagued out when he was talking about pre-menopausal).  Another aspect of the presentation was about the grading of cancer for ILC and how the different way the cells present has a different impact on the grade compared to ductal.  I didn't quite follow it so will have to go back and watch that bit again, but as I think I understand it, what would be classified as Grade 1 for ductal, due to the more aggressive nature of the cell structure in ILC, would be classified as Grade 2.  But don't hold me to that one, because I'm really not sure.

arpie

Can you let us know if/when you find the recording, @Sister?  So you got up for it?  Well done you!

Re chemo & ILC - that is along the same lines as what Liz O'riordan said in the article that @kmakm found - but as you said - no reason not to do chemo until further extensive research indicates otherwise.  

And who would put their hands up to be the 'non chemo'  guinea pigs?

berry

It sounds about right Sister.  I am subtype- classic,  grade 2, ER+ which is supposed to be good.  it may or may not have metastasized but the post menopause anti estrogen is supposed to starve any escaped cancers.

youngdogmum

Very glad to hear the preliminary points from @Sister so far correlate to everything my Onc has told me. Gives me confidence. 
I hope re: chemo someday it will be a known definite yes/no question 

kmakm

It should be. My understanding is that we're close. Cost will be an issue of course... A conversation I had with a research doctor at the Garvan Institute said that it was getting closer for the endocrine therapy as well. As in a test to know whether or not you fall into the group that it benefits. Too late for us, but hopefully for our kids generation, for all things BC.

berry

Firstly Breast Screen Australia need to invest in 3d mammograms making early diagnosis possible. Also literature needs to be made available NOW, educating women why their 2d mammograms might misdiagnose 10-15 % of women.