My ILC story

[KMBL_]

I was asked by a member here to post my lobular breast cancer story that was placed on the Lobular Breast Cancer Alliance website. I am posting the link here.

lobularbreastcancer.org/my-...

[love2golfwell]

Thank you for sharing this article. So sad that it took so long for her to be diagnosed. I suspect that she had for quite a while before her diagnosis. Hope she is doing okay.

[KMBL_ in reply to love2golfwell]

The story is actually my story. I’m still doing relatively well. In looking back, I’m sure it started in my 40s. Part of me is so glad I didn’t know while my husband and I were raising my daughter. I can’t imagine how hard this is while children are small. I will probably not get to see my grandson into adulthood, but I’m spending so much quality time with him while I can.

[love2golfwell in reply to KMBL_]

I'm sorry, I did not realize it was your story. I guess I did not read the first few words. I'm glad you are doing well. I think it would be hard to deal with all of this when children are small. It was difficult enough that my children were in high school and college when I was originally diagnosed with breast cancer. When I was diagnosed with MBC, one was married, and one in a serious relationship. I hope to be here for my son's wedding and to be here for at least one grandchild. Enjoy time with your grandson. Sending you hugs and prayers.

[KMBL_ in reply to love2golfwell]

No need to be sorry at all. I appreciate you reading my story, and I hope you get to experience the joys of being a grandma. 🤗💕

[love2golfwell in reply to KMBL_]

Thank you so much.

[Fiercefighter13]

Thank you for sharing your story. I think it helps many of us to see that we are not alone in our experiences with not only metastatic breast cancer, but the aspects of lobular breast cancer within the metastatic setting. It's good to see that you have found peace and a good reason for why you would not have wanted to know earlier than you did, as you mentioned, raising your daughter. I was diagnosed with early breast disease, stage 1-0, and was told the double mastectomy and Tamoxifen would result in no metastasis. Wrong! I spent many years suffering with severe back and bone pain being told I was fine, when if fact my lobular carcinoma had spread to many of my bones. I think it's of the utmost importance to find medical doctors who listen and look.....look extensively with lobular. You said it's sneaky, and indeed it is very elusive and very different than ductal and inflammatory breast cancers. Take care!

[KMBL_ in reply to Fiercefighter13]

I’m sorry you had to suffer with doctors not listening as well. It happens to many more than we think. You take care as well. 💕

[Bettybuckets]

Sneaky for sure! Glad you can tell your story and make people with ILC very aware to be your own advocate when things don’t feel right.

[KMBL_ in reply to Bettybuckets]

Thank you. 💕