Lobular Breast Cancer: Let's share and support each other

Great idea. I would be very interested.

Sorry Lubular Breast Cancer. They called mine Invasive Lobular Cancer so I did not recognize.

Thank you for this video. I am not familiar with FES-PET scan but will now research this.

Wishing you well. What is LBC?

I'm working wigh ANC of 632 but hoping fir improvement by next week. I meet with lobular onc virtually next Tuesday and if all is a go I'll head to Pittsburgh. I registered for the symposium and didn't see anything about streaming. I'm hoping LBCA will have if on video after. LBCA does programming and interviews specific for lobular.

Thank you so much for your involvement in this. Please post what you leaned or share a link if it will be videoed.

Lobular makes up about 15% of breast cancers. The LBCA (Lobular Breast Cancer Alliance) is working on increasing awareness and research. I'm going to the International ILC Symposium in Pittsburgh next week where latest research into scanning and therapy will be presented. A lot of people are working towards making treatment and imaging specific for lobular

I'm not sure who or what qualifies for this particular test, but if it works, we should all have access to it. We have to be our own health care advocate, just because the doctor doesn't want to give it to you, check your rights and see if your insurance will allow it. Or find a doctor who will give it. Not sure what the injectable is, be sure to check with your other doctors if you have any kidney or liver issues. I'm in the same boat, just starting to look into this

ILC, bilateral mast Jan '23, 1A and 1B, 6 cm on one side, multi foci on other, no nodes, clear margins, chemo, radiation.

My dr plans to follow up with CAT scan of chest, abdomen, pelvis in October. I asked about MRI (that's what found it at diag) ... he said mri is too focused, not useful for searching. I'm also curious about PET, I see that mentioned a lot,, seems like that's how people's mets are found sometimes? But again, Dr says too focused for searching. Is this the explanation/understanding others have?

Good morning my lobular sisters. Love this subject about imaging and how we are the unfortunate gals whose cancer is unlikely to show up, yet they lump (no pun intended) our treatment right in with ductal as if it's going to work. Are there any large groups out there advocating for more accurate imaging, like the MRI, for lobular cases? We deserve a fair shot at being detected early like everyone else! Mine was detected in 2012 and dismissed, then diagnosed in 2017 (same exact area) followed by a DMX. Maybe all of those million$ they raise for awareness could be used to help us? I think we're all pretty aware now. The 10 to 15% of us need to be acknowledged. 😤
I am also in a position I am very angry about, I have no oncologist. I moved and I interviewed one at Florida Cancer specialists and she did not know much about lobular. The one before that also didn't know much. I am weary of educating people with medical degrees on how lobular is different.
When I get a little more settled in my new home, I think I will be doing a lot of research and contacting some big names and groups with big money to see what can be changed. If they need a louder voice, I would invite you all to make some noise too.