Making the ILC group a PRIVATE GROUP (instead of Public to the world!)
Hi guys At this point in time, the ILC and Young Women's groups are totally PUBLIC ..... anyone in the world can see the posts. I've put a request in for the ILC group to be private ..... so that we may discuss issues and developments in total privacy .... I have posted this in the ILC Group as well ..... General 'info' posts on ILC can be put in the Group AS WELL AS in the main forum, as I realise that not all members with ILC are a part of the group. But this way, if we have more personal/delicate matters to discuss, we can do so in total privacy, I know that the Group Posts are not necessarily sent to all members, so I would appreciate it if you would agitate for this to happen. I will tag @Carissa_BCNA in this post as well, to see the response, as she will help accomodate the request, dependent on the replies. Please make it a YES cheers Arpie We don't even have ILC or Invasive Lobular Cancer as a 'tag' .....
Learn more about Lobular
Hi everyone - I haven’t posted for a very long time as I’ve been mainly involved in several Facebook groups - two of them, specifically designed for people diagnosed with ILC or invasive lobular carcinoma. While there’s a separate BCNA group for lobular cancer people, there’s a ton of information out there, that’s just not getting enough distribution in Australia. The BCNA lobular podcast has some excellent information and also misses a lot of information. I’m writing now, because I’d like to share an article that’s just been written for Healthline in the USA, that sums up lobular in a easy to understand way, and highlights the need for more exposure and more research. In the article, there are great links to follow including a link to the Lobular Breast Cancer Alliance (LBCA), an all-volunteer advocacy organisation in the US and now in the UK, trying to raise the profile of ILC in all ways humanly possible. I urge any lobular peeps to check it out. Please reach out if you have any questions about online ILC resources. https://www.healthline.com/health/breast-cancer/invasive-lobular-carcinoma-is-an-understudied-form-of-breast-cancer-its-time-to-change-that#Clinical-trials-are-few-and-far-between
Ovaries removed
I was diagnosed with lobular breast cancer in June 2019. ER+ I’ve finished chemo, had surgery & about to start rads next week & then have to take tamoxifen after I’ve finished rads. I’ve read on forums that some ladies also have their ovaries removed if they have ER+ breast cancer. Is this because they have the BRCA gene? My surgeon has not mentioned anything to me about having my ovaries removed & I’m wondering if I should.
ILC Webcast
@berry kindly posted this link on the ILC group but I think it may be of interest to others outside of the ILC sphere. It is a link to an event that was webcast from US on lobular carcinoma so is obviously highly skewed to this variant but the panel is drawn from different sectors of the medical profession and they do discuss things that are common to us all including screening. (Tip - skip the first 20 minutes or so as it is dead air) https://www.kaltura.com/index.php/extwidget/preview/partner_id/2207941/uiconf_id/37372271/entry_id/1_z2v70bhq/embed/dynamic? ;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 BerryLobular Carcinoma Advocacy Group
I don't do a lot of googling about BC but every now and then I dip my toes into the general morass of information. Now, I may have come across this group before but, with my murky memory of last year, who knows? I did think it might be useful for others, though, so hence this post (although you may already know about it). It's an ILC patient advocacy group in the US. I haven't yet looked at their videos as we're hurtling fast towards no-data-end-of-month status. https://lobularbreastcancer.org/welcome/ There seems to be a number of resources on it plus info on trials around the world.