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

@vinette So sorry to hear this...and on Christmas Eve. Like you, I have ILC with no family history and I too am 78. I'd never heard the word lobular before! When you meet with your medical oncologist or surgeon (for me it was a surgeon) she/he will probably tell you the stage, the size of the area and that will determine the choices you have for treatment. That stage can change somewhat once you have surgery...whatever you choose. Lumpectomy was the choice I made based on what other women had chosen with a similar diagnosis. Some women choose a mastectomy if they do not want radiation. It's my understanding that chemo does not work well for lobular but others should speak up about that. Because only 15% of breast cancers are lobular, we do not have the body of data ductal patients have. I hope you'll keep us informed!

Thanks so much marshgirl24. Your comments really helped! As I learn more I definitely will be keeping in touch. And also thanks for all the hugs I've recieved.

Hi, I'm 52 and was diagnosed with stage 1 ILC in my left breast. After a MRI they realized it was 5.8 cm wide and classified it as stage 3. I'm hormone positive but HER2 negative. they originally recommended a lumpectomy and reconstruction, but now say that is not an option and I need a mastectomy and radiation. Is it normal for them to get the size so wrong? I'm very nervous about the radiation and the hormone blocker. I just cant help feel like I will never feel normal again.

Also was anyone else so tired before being diagnosed? Is this a symptom?

I'm sorry to hear about your diagnosis, and I can only imagine how upsetting it must be to go from thinking it is stage 1 to stage 3. I've read that it is common to get the size wrong because lobular grows single-file instead of in a clump, like ductal. A mammogram missed my lobular carcinoma but it was caught on an MRI. I had a mastectomy and am now on a hormone blocker, Tamoxifen, which my system tolerates well. I will go on an aromatase inhibitor once I am menopausal, which I look forward to because some studies show the AIs work better than Tamoxifen on lobular.

In the months leading up to my diagnosis, I was exhausted. I would have to nap every afternoon after I finished working. Thankfully, my energy levels are now back to normal. Hang in there and just take it one step at a time. I know it's hard, but you'll find that you have more strength than you thought you did.