Lobular Carcinoma Advocacy Group

SisterSister Adelaide Hills, SAMember Posts: 4,340
edited April 6 in General discussion
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.

Comments

  • Patti JPatti J Member Posts: 558
    Thanks @Sister. There appears to be lots of information on mets as well. 
  • SisterSister Adelaide Hills, SAMember Posts: 4,340
    Yes, there does seem to be.  I'll have to wait until our data has rolled over to have a good look.
  • arpiearpie Mid North Coast, NSWMember Posts: 3,002
    Many Thanks for that link, @Sister - I shall add it to my info database!!  

    The fact sheet has some very interesting bits in it ..... specially re recurrence & mets.  My surgeon mentioned that ILC patients may be prone to recurrence.



    The Pelops Trial sounds interesting - giving Tamoxifen or Letrozole for 2 weeks PRIOR to surgery as well as afterwards ... it sounds interesting!  I wonder if anyone is doing similar in Aussie?
    https://lobularbreastcancer.org/pelops/
  • Jane221Jane221 Central Coast, NSWMember Posts: 1,133
    @arpie, the Pelops Trial sounds interesting and it will be good to see if Tamoxifen or Letrozole have different effects on ILC and whether Palbociclib provides additional protection. It doesn't look like there's a similar trial happening in Australia unfortunately (https://www.breastcancertrials.org.au/current-clinical-trials) so it will be good to hear about the results from Pelops when they're available.
  • SisterSister Adelaide Hills, SAMember Posts: 4,340
    For those interested, there's a webinar coming up through this organisation, 

    Lobular Breast Cancer: Understanding This Subtype and its Treatment

    https://lobularbreastcancer.org/lbca-share-education/

    It's to coincide with a medical conference being held in Pittsburgh on ILC.

    Unfortunately, suited most to Night Howlers due to the time difference!
  • youngdogmumyoungdogmum Gold Coast Member Posts: 199
    I believe the webcast above is now available, here is the link:
    https://www.sharecancersupport.org/lobular-breast-cancer-understanding-this-subtype-and-its-treatment/

    For those of us with lobular pre menopausal, interesting to see the results that Letrozole does seem superior to Tamoxifen in this subset of disease when comparing 8 year survival to ductal patients on the same drugs..however at the end Dr Otto answers a question surrounding ovarian suppression and AI versus Tamoxifen and his answer seems to contradict that exact study? Curious what others perceive. 
  • SisterSister Adelaide Hills, SAMember Posts: 4,340
    I'll have to rewatch @youngdogmum As I had already "officially" moved into menopause just before chemo, I tend not to focus on ovarian suppression.  I did find the comparison to Tamoxifen particularly interesting as my sister was on that and it did her no good (I don't know what type of bc she had) and as such, I have instinctively veered away from any suggestion of that as an alternative to AIs.
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