ILC metastases to the stomach

Sorry I can't answer for USA. I hope others respond soon!

Unfortunately, ILC mets show up in all sorts of places. I have cells in the lining of my stomach, as well as bone mets.  I have been on 2 different chemos thus far. First abraxane, which kept things at bay for about 8 months , then TMs started rising. I am currently on Xeloda, which has generally brought my markers down further s far. The xeloda has been easier to tolerate so far (and I still have my hair..). Keep in touch  and let me know the progress.  Good luck!

You have probably already come across info on Hereditary Diffuse Gastric Cancer, a syndrome with a high degree of association with ILC and which can show up in genetic testing. Mets will also occur independent of this condition however.

I applaud your efforts to educate & join people together. Sharing information is very helpful. Best wishes on your facebook project.

Ambry Genetics includes CDH1 (responsible for HDGC & ILC) on their BRCAplus "short" list of mutations causing named conditions such as Li-Fraumeni Syndrome associated with abnormal TP53, etc. 

I just read the book Breakthrough by Kevin Davies & Michael White which describes lab work that took place 20 years ago, setting the stage for the current situation. Most of us are unaware of this history: I find it fascinating.

We now can access a lengthy panel of even more obscure tests which don't have much clinical documentation so treatments are not defined. A classic case of science advancing faster than medical practice making patient advocacy, education and support very important.

If the only option is to have your stomach surgically removed, it might help to have contact with at least a few other people. Together, progress which could be of benefit in the future for these rare complications is possible. Keep your spirits up and press on!

Lily - google total gastrectomy and you'll find personal stories of people surviving and thriving without a stomach.  It certainly doesn't sound like an easy path by any means, but if you know you carry a harmful CDH1 mutation, it's pretty much the only way to go as diffuse gastric cancer (much like ILC but worse) is extremely hard to detect with scans or endoscopy until it's too late.  The Broca panel tests for CDH1 too.  HDGC is very rare but has a high penetrance that affects males and females so it can't hide in a family history as easily as a BRCA mutation sometimes can.  Very few women with ILC carry a mutation but anyone diagnosed with DGC with any family history of DGC and/or ILC would probably be offered genetic testing.  

The trouble with HDGC is that (as with ILC) it can hide on scans. It may not show on endoscopy, being diffuse=spread through the area. 

It is very rare but our small family sizes these days along with vague histories from when cancer was not talked about make it a remote possibility for a few. Genetic testing will find the associated abnormality.