Forum Discussion
berry
7 years agoMember
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 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
89 Replies
- kmakmMemberIt 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.
- youngdogmumMemberVery 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 - berryMemberIt 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.
- arpieMemberCan 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? - SisterMemberSome 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.
- youngdogmumMemberI 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 !!
- berryMemberI stayed awake but feel asleep while the dr was talking
- SisterMemberInteresting webinar. Apparently, a recorded version will be posted up on the SHARE Alliance site.
- berryMemberI 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.
- youngdogmumMemberI’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?