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

Thank you so much! So encouraging! I have a cousin that just went through this, ending in a mastectomy. She just had her reconstructive surgery 2 weeks ago. She has been my rock! I will tell everyone after my surgical appointment on December 7th. Thank you!!!

@glendy you DO got this! You’ll learn more about your diagnosis each day and the experts will lay out a plan for you. Educate yourself and ask many questions. Write them down and write down the responses. The more you know will help drive your care tailored to your preferences. It feels daunting at this point of your journey…believe me, I know. I had a different breast cancer, but the feelings are the same. I’m on the other side now and wonder how did I get through all of this. I relied on family and friends. I didn’t want to tell them at first, especially my children and family, but they were the best support. Like I said…you DO got this!

I received my diagnosis an hour ago. I am so glad there is a support group for this. I will try and figure out what some of the abbreviated language you are saying but I think, after I fully get into this situation, I will eventually know. I am 58 years old. My "grape" appeared 6 weeks ago now. I called to have an mammogram scheduled one week after I discovered it...hoping it would go away, which it didn't. They couldn't get me in for 2 1/2 weeks. I showed up and they asked me if I had any pain or discovered anything..I said yes and they told me that I needed to go to a different facility. That appointment took me out another week. Then another wait for the biopsy and results. The "grape" was not the actual spot for the invasive lobular carcinoma, it was beside it..possibly just inflammation from it. But thank goodness for it, I would have never detected it. I am kinda scared and kinda thinking..you got this. Right now, telling my parents and my son is going to be the worst.

I hope all goes well, and that your Genetic testing comes back Negative. I have had 2 Lumpectomies, and both recoveries were easy. I hope you have the same experience.

Surgeon recommended lumpectomy - referred to data supporting that decision. I'm waiting for genetic tests given family history but have surgery scheduled in two weeks (OR's are backed up and if I didn't take that I would have to wait until end of Dec). If all goes well, radiation and then anti hormone like you all mentioned. Praying for clean margins. Oncologist mentioned most lobulars are grade 2 given how sneaky they are; chemo still on table as pathology reports seem critical post -op. Thx for all support. At 57 yrs I dread telling my 24 and 22 year olds but will do this weekend - the surgeon made it sound like I feel would good in a few days -but in my experience, recovery is also understated by surgeons:).xoxoox

Sue Ellen, how did the meeting with your surgeon go?

I was diagnosed with lobular breast cancer almost four years ago. I was also triple positive and because I was Her2+, I had to have chemo.

I had a lumpectomy with clear margins, and radiation. My healthy breast was always clear.

Here I am four years later and doing very well. Hope this helps. ♥️

That is what they told me, mastectomy used to be standard but a lot changed. I know lobular can hide so I sometimes get nervous about that but it can hide even with a mastectomy so who knows. So personal and so hard. Ask all your questions because you need to feel secure with your decision! That is what matters most.

Thanks so much for your reply - a friend was diagnosed with ILC 8 yrs ago at age 49yrs and she went for double mastectomy but so much has changed and I understand that lumpectomy seems to be recommended. My MRI came back showing nothing in left breast. I meet with surgeon tomorrow and Thurs and hope to soon have more info to share. Takes a village -
xoxoxoxo

I am er+, pr-, her2-. My doctor got clean margins and 1 node that was negative. I am stage 2. My doctor guided my choose as well. She explained that a lumpectomy flowed by radiation is within 3% of having the same outcome as mastectomy and that a mastectomy doesn't guarantee no recurrence as they can never get all the breast tissue. She also explained the risks of mastectomy vs. Lumpectomy. I decided lumpectomy. My oncotype came back high at 34, I was grade 3 pleomorphic, so currently doing 4 rounds of TC then radiation followed by endocrine therapy. Good luck with your decision, I know it is hard.