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Eastmum's avatar
Eastmum
Member
5 years ago

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. 
lobular-carcinoma
  • Eastmum's avatar
    Eastmum
    Member
    5 years ago
    @Sister and @Flaneuse - nice to see your ‘voices’ hope you’re both doing well xxx
  • Eastmum's avatar
    Eastmum
    Member
    5 years ago
    @arpie - yep great to post it there! I’m not sure how many new people are aware that lobular is so different, which is why I chose to post it for everyone. As @ddon’s post suggests, some doctors aren’t even telling their patients that the type of cancer they have let alone highlight the differences. 
  • Eastmum's avatar
    Eastmum
    Member
    5 years ago
    Don’t be alarmed - be aware :)
    Knowledge is key! The more we know and the more education we can get out there, the more informed people will be and the better they can advocate for themselves. Knowing that you have lobular cancer and all that could mean gives you more power to insist on checks and tests that you may not have thought of being important before - such as colonoscopy etc. 
    I agree, it’s scary but it’s also very important to know. I’m really surprised that you weren’t informed by any of your doctors that you had lobular cancer. It just goes to show how much more we need to do to get awareness out there. 
  • ddon's avatar
    ddon
    Member
    5 years ago
    That’s very interesting. Not to mention very scary - especially when I have the double whammy of both types of cancer. I didn’t know of the risk of mets to ovaries, intestines and peritoneum. That just adds another whole level of worry. 
  • Eastmum's avatar
    Eastmum
    Member
    5 years ago
    Hi @ddon - lobular Cancer can be very different to ductal yet most oncologists don’t treat it differently. This is part of the problem. The research that has been done so far, supports that most (not all) lobular cancers have very specific characteristics in terms of being hormone responsive, responding to chemotherapy etc. The other thing about lobular is that it is recognized to metastasize in a different way. I recommend that you look at the information on this website - there’s a lot of excellent information. https://lobularbreastcancer.org/
  • ddon's avatar
    ddon
    Member
    5 years ago
    How does it make any difference if your cancer is lobular or if  it’s in the duct? My mother had lobular - treated exactly the same way as ductal. My tumours were a mixture of both and I also had LCIS and DCIS. My oncologist, surgeon, radiation oncologist have never mentioned anything about the type - I only know because I read my pathology reports. I know that it can be more difficult to detect in the lobes but as far as treatment and risk of recurrence/ or secondaries - is there a difference?
  • arpie's avatar
    arpie
    Member
    5 years ago
    Thanks @Eastmum - we must be following the same FB page! ;)  I added that topic to the ILC Group last night!

    take care, stay well xx
  • Sister's avatar
    Sister
    Member
    5 years ago
    Good to hear from you @Eastmum.  They do have some good info on the LBCA.
  • Flaneuse's avatar
    Flaneuse
    Member
    5 years ago
    Thank, Y . @Eastmum I haven't been here for ages either - been selfishly trying to get on with other aspects of life. Came on today to post the solution to my radiation affect-effect mystery. Good to have this additional information. I've tweeted your link on my Twitter feed.
    Other than that, hope you are well.