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

I too had invasive lobular cancer in my left breast. my cancer was HER2 + I had chemo, mastectomy, radiation, and more chemo. The radiation and second chemo was needed because I had residual disease in the tissue removed. The waiting for test results and the unknowing are so difficult to deal with.

I just finished treatment for this same thing, although my tumor was smaller. The “invasive” makes it scary sounding but as you said, it had just spread a bit outside lobule. I had a quite easy lumpectomy followed by radiation. I didn’t need chemo bc lymph nodes were not involved. Everyone told me it was extremely curable and not to panic, so I didn’t and it turned out ok. Honestly, other than some mental anguish anyway, it went smoothly and I feel safe putting it behind me. I have faith that Mayo did what was needed. I am 66 so perhaps a much younger woman may need more aggressive treatment. I’m on an AI for 5 years which I’m not fond of, but just started it and I’ll stop it if I have trouble. I realize I was a lucky one and do not mean to make light of cancer or the severe things some women go through. Just trying to give some hope.

Just had a left mastectomy after diagnosis with invasive lobular breast cancer. Pathology indicates carcinoma in one node. My oncologist says this scenario used to be considered Stage 2, but with the effectiveness of letrozole she doesn't think chemo or radiation is necessary. She did set up a consult with a radiation oncologist, just to be sure. I'm seeing him on Monday. Fingers are crossed!

Its scary and frustrating to have to make so many decisions when this is all so new.......we expect doctors to TELL us what to do rather than ask, us what we prefer, and that can be hard. Still, I've found that if I ask lots of questions, my doctors come up with some very good answers. I opted for reconstructive surgery, so we're going down that road (which is trickier than I was prepared for!) The key is - ask questions, stay calm, think positive, and be kind to yourself. It's important.
Good luck.......sending prayers to everyone in this frightening battle.

You are going to have to do it all. Have all the testing. Pet scan. Mri. Genetic. Ultra sound. Lymph node. Radiation. Possibly masectomy depending on if it has spread into margins and lymph nodes. Get 2nd and third opinion after all your testing. Jump on this and do all you can to save yourself. Get going.

I had ILC left breast 12mm 12:30 6cm from nipple. It was undetectable with mammo that I had religiously every year along with ultrasound. I felt a lump a few months after my yearly mammo and ultrasound. Had a mammo and it did not show. Had ultra sound and did not show til I put my finger right on lump. It showed on mri but dye is bad for you. Insurance is letting me have ultrasounds every three months and mri once a year. I am not having mammos anymore because they did not show cancer. I believe if you insist with your doctor to have mri more often insurance will let you. I worry about the dye. I flush my body with saline and drink plenty of water and Gatorade to flush dy after. You have to insist on your care
Insurance will pay if you do.

@estebanf

Check out the Lobular Breast Cancer Alliance site for tons of information….

Lumpectomy and radiation and Letrozole as past menopause.

New here concerned my daughter 41, was just diagnosed with invasive lobular carcinoma.. from biopsy taken couple days ago.. size 3 cm..preliminary say lymph nodes ok, told her calling it invasive because it’s broken into tissue.. seems like stage 2 now more testing begins. Has family three children, lives in Washington.. scared dad. She is too,
Anyone else have similar diagnosis and can share , treatment and or outcomes.
TIA

My thoughts are with you while you mull over your myriad of choices. We make the best decisions we can, given the information available.

In order to make my decision, I have done the following:

*I deliberately cruised past posts that talk about chemo/radiation/stage IV/Mets because they were not helpful to me making my informed decision, they simply do not match my current known experience. I hope that doesn't sound callus. It is not meant to be. Posts that don't pertain to my scenario still held the possibility of swaying my decision based on emotion, rather than rationale. But, that's just the way I approached it.

*I have watched many YouTube talks with oncology/surgeons who do this work for a living, based on the most current ILC information available. There is a wealth of educational information regarding ILC and our surgical options on the Lobular Breast Cancer FB page.

* I knew that I didn't want radiation (if at all possible, knowing it's not officially off the table) possibly affecting my body in a negative way when it came to reconstruction options and while I realize immediate effects of radiation aren't probably all that bad, it's the long-term ones you can't see up front that I want to avoid. I wanted to eliminate the lumpectomy/re-excision likelihood with ILC.

*I knew I didn't want to go flat.

Those were my primary drivers.

I think I changed my decision about half a dozen times while busy gathering my supportive reasoning and think that's pretty usual, especially given that we are under time constraints to provide an answer in the initial stage of this thing.

Best of luck to you while you come to your decision.

My ultimate decision was to do an SMX with immediate DIEP flap reconstruction, going in on 3/28. I am not thrilled with keeping the "unaffected" one, but also cannot argue with the fact that we all could have cancer anywhere in our body and not know it, but can't remove all of our organs as a precaution. I do not carry any known genetic mutations, so single, it is. That means a couple touch-ups to lift/fill a bit on the native breast, but I'm all in. I just feel better ridding the right breast of as much tissue as possible (tissue sparing, but not nipple) even if only for a couple % improved risk. Hope this all makes sense and is where I have found my peace.