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

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?

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.

@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!

I don’t remember exactly but was still under treatment for my right breast. The lobular cancer never showed on a mammogram. It doesn’t. My left breast was checked cause I had it in right breast. I wasn’t familiar with mirroring. I had the double mastectomy because I didn’t think my body could handle radiation right after chemo. Judging from 2 friends who had radiation now have fibrosis in the lungs. I didn’t want to go through that. Being I did the double mastectomy I didn’t need radiation.

Nanny23 that must have been a lot to handle. How soon after your lobular diagnosis did ductal cancer appear in the other breast? I am a bit concerned about that since breast cancer sometimes is “mirrored” in the other breast. Thx for your input!

I had lobular breast cancer in my right breast. It was aggressive. Then they found cancer in my left breast. Not lobular ductal. I had two lumpectomies but I needed chemo before I decided to get a double mastectomy. My decision was based on I would have needed radiation right after chemo. I made the correct decision. I am still here after 22 years. Radiation has so many complications.

My Christmas Eve "gift" this year was a positive diagnosis of ILC. No family history of breast cancer and at 78 this was totally unexpected. So far I only have the pathology report. Meet with an actual medical "person" on January 6. So glad I found this site - it's already helping me compile my list of questions and just hearing from others with ILC is the support I need right now.

I'm in. I'm still shocked after the diagnosis.

I had stage 1 pleomorphic lobular breast cancer on the right side 18 months ago. The word “pleomorphic” makes me uneasy, and I would rather have had classic lobular, but I was told that with proper treatment (in my case mastectomy, chemo, and endocrine therapy) my chance of recurrence went down to 10%. Physically I feel great, and when I get worried, I try to focus on the positive, like how odds are in my favor of it NOT coming back. Did you have a high onco score?

The survival rates are good.. it’s suppose to be slow growing. Yes all my friends tell me they
Know people that had it and was no big deal. Different when it’s you. Luckily I didn’t get the weakness from radiation , but I am a month out and still peeling and discolored. Hope you didn’t get 5he weakness too🙏
You only need the hormone blockers if you are estrogen positive and her2 negative
I think nt diffuse your doctor meant they are not a lump, more branch like, and they can be multi foci.. more than one. Mine were right next to each other. Even though my margins were clear, I figured why couldnt another pop up close to that.
I never new about that protective film you mentioned until I just read about it. I think everyone reacts differently to radiation.
Wishing you the best! Happier holidays!