Hi @MargaretTurner - so sorry to see you've joined our select little group here, after your earlier BC diagnosis xx. Lobular is the sneaky one - sometimes turning 'rogue' decades after the original diagnosis ... you may like to join the private metastatic group, where you can chat in 100% privacy with others with Mets. Jump on here & click join.
https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer ;
That's great that your treatment is working well ... try not to get ahead of yourself .... your Onc team will be making sure you get the best treatment available, for the best results - tho it is also totally normal to wonder what happens once the meds stop working xx. Try not to dwell on it tho.
Lobular Breast Cancer Alliance is considered a reliable website & also has a dedicated Metastatic Lobular page, which is updated regularly and often mentions Clinical Trials.... they encourage ILC patients to participate in the trials - so it is important that your Onc knows this, so they can put your name forward, if this is what you would like to do. The more trials, the better chance of better treatments.
https://lobularbreastcancer.org/ilc-clinical-trials/Lobular Breast Cancer Alliance also has a dedicated Metastatic Lobular page, which is updated regularly ....
https://lobularbreastcancer.org/metastatic-ilc-information/Every now & then we see overseas trials (not yet available in Aussie) and we ask 'WHY NOT HERE?' Any time new trials are available, it is important that your Onc be 'on top of it' and push for you to get onto them, if they suit your condition. We hope to have a dedicated 'Clinical Trials' area soon .... where everyone can see all the different trials in one spot ..... eg, there is a trial in UK & USA on a promising vaccine for Triple Negative BC patients .... but it has not 'started' in Australia yet ..... which is a shame.
If you are 'up to it' - other lobular members (me included) would be interested in what alerted you to the eventual Mets diagnosis, as it can show up in so many different areas - Was it specific back or hip pain, or maybe it was in another area? Were your concerns treated 'seriously' and acted up promptly?
We have a Lobular Private Group too, if you wanted to join that one!
I think the Genomic Testing will become cheaper as time marches on, as it is being used more often now - others will know more about it than me. Tho we had it done in 2019 when my husband was diagnosed with Mets - his samples were sent off to the USA for testing/results - and was quite expensive!
take care, stay well
