Mets 17 years after initial diagnosis. Invasive lobular.

Firstmate52

I was diagnosed with Stage 2 invasive lobular in my lt breast in 1998. Had bil mast, neg lymph nodes; 4 cycles of chemo and 5 years of tamoxifen. No problems till a few months ago. I guess I should thank my fat for finding it. I went to a plastic surgeon to see about having a tummy tuck after a 50# wt loss. WEight loss was due to diet and exercise, not poor appetite. He did a CT to make sure there were no hernias. CT showed fluid in abdomen. Labs all WNL. Attempted to drain fluid with a needle. Inadequate fluid. Had a laparoscopy 12/18. Abd covered with "white stuff" fluid and path report show malignant cancer lobular breast type cells. My liver, etc are all OK. The tumor is just covering the organs, not invading at this point as far as we know. Needless to say my husband and I spent a day crying. I still am in shock. I do not feel sick. Only symptoms are decreased appetite and feeling full quickly. I have an appt with an oncologist to see what options are. It is ER/PR positive and HEU negative.

If anyone has experience with this I would love to hear from you.

Moderators

First and foremost, we want to send you a huge, gentle hug . We are so sorry for what you and your husband are going through, and hope that your treatment team can quickly and effectively get your treatment going ! You may also want to post in the forum, https://community.breastcancer.org/forum/8

We are here for you.

KBeee

I hope you get answers, and hope all other scans are clear. ((Hugs))

bevin

stopping in to send you support. I am sorry you are dealing with this but so glad you had a good surgeon who checked things out. Praying they can control this for you. Good luck, others with more input will be by soon.

cuddyclothes

Stopping in to give hugs.

sueinfl

I am so sorry, Firstmate. Please look into the link I am sharing. It is on the Inspire website and it is the posts of many women who also have mets to the ab area. I am still officially Stage III, but not optimistic since my grandmother had gastric cancer and my mother the same. Lobular is not called sneaky without good reason.

https://www.inspire.com/groups/advanced-breast-can...

ShetlandPony

Hello, Firstmate. As the mods suggested, you can join us on the stage iv forum here on BCO. You might want to start a thread there about abdominal mets so anyone with that experience will be likely to see it. I found one but it was from 2009. Since ILC and abdominal mets are less common, I hope you are at a NCCN center or can get an opinion from one. A little word of encouragement: perhaps the fact that you went so many years before this recurrence means it is not too aggressive and will respond well to treatment.

Edited to say here is a recent one called Mets to stomach and colon. It includes discussion about peritoneal mets, too. As expected, many ILC patients.

https://community.breastcancer.org/forum/8/topics/...

Sueinfl, I hope you have consulted a cancer genetics expert. Best wishes to you.

sueinfl

ShetlandPony, I have not done genetic testing yet. I am looking into liquid biopsies for circulating tumor cells and will have any captured examined then. Every time I have had tumors removed, I simply got through the surgery thinking my oncs would take care of testing beyond the usual ER/PR/HER2 status. My bad.

I'm not confusing genetic testing with testing for mutations, am I? You would think I would be clear on this by now.

Sue

ShetlandPony

Sue, I was not thinking of testing the tumor in order to characterize it. I was thinking that you might consult a cancer genetics specialist to see if he/she thinks genetic testing would be appropriate for you or your family members.I remember reading that there is an uncommon genetic mutation of CDH1 that is associated with both gastric cancer and ILC. This would be similar to checking for a BRCA mutation in a family with ovarian and breast cancer cases. Please don't let me scare you. I'm no expert. Just thought it would be something to ask about.

"Lobular breast cancer: incidence and genetic and non-genetic risk factors"

http://www.breast-cancer-research.com/content/17/1...

ShetlandPony

Firstmate52, I saw this new thread: "Peritoneal Metastatic Breast Cancer"

https://community.breastcancer.org/forum/8/topics/...

Meow13

Maybe an AI drug might be used. Best wishes.

sueinfl

Thanks ShetlandPony. I receive my healthcare through the VA. I will ask my onc about genetic testing next week. No fear about it. The more identifiable mutations, the more targets!

Beatmon

So sorry to hear about this. I can't help but immediately think"what a kick in the ass". Good luck with your new treatment plan