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

Breast Cancer | Last Active: Nov 12 5:54am | Replies (395)

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@lisamgee

Hi @cindylb ,
I have been recently diagnosed with stage 1 ILC., right breast. When mammogram came back suspicious, my very first though was no matter what, the breast has to go. No one is pushing me either way (lumpectomy or mastectomy) and I am still thinking mastectomy. Just had second opinion on my procedure options and now I am leaning towards lumpectomy. It's daunting! Can I ask how you came to your decision? I know it's an extremely personal choice. Thanks!

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Replies to "Hi @cindylb , I have been recently diagnosed with stage 1 ILC., right breast. When mammogram..."

Hello @lisamgee
Sorry you're joining the Breast Cancer Club (sigh) but it looks like you've caught it early and that's a very good thing. The reason for my choice to go with a bi lateral mastectomy was this..... I had been diagnosed with Stage 0, Lobular Carcinoma in Situ (or a pre cancer basically) on my left side/breast two years prior to my Stage 1 diagnosis, which happened to be in my right breast. I had lobular cancer in both breasts by the time I made my decision. Where Ductal Breast Cancer tends to be in one breast, lobular can show up in both over time. I had already had a lumpectomy of my left breast when they found the invasive cancer in the right. I decided that if it was going to be in both breasts it was only a matter of time before the invasive cancer might show up in the left breast. I could have opted for the lumpectomy of the right breast and that would have been a very reasonable choice. Post bi lateral mastectomy they do tests on all of the breast tissue and I had all kinds of scary stuff in both breasts so in my case...a good choice. Whether those cancers in situ would have evolved to more invasive cancers, I'll never know but.....my second reason for wanting to do the bi lateral mastectomy were these: 1. I'm not good at handling stress and didn't want to worry about it anymore, no breasts - less risk over time. 2. My breasts were a wreck (very saggy and unattractive) and I didn't get reconstruction and I liked the idea of the freedom of no bras or issues with breasts (but I do look a lot like a walking pear with no breasts and dressing can be tricky) - although I do have a prosthetic, which I've never worn, but could and might some day, ha ha. 3. I am married and my husband didn't care whether I had breasts and also I was in my mid 50's (now 65) and was comfortable with my physical appearance without breasts...so my age played a factor. My choice did bring a problem however - during my surgery there was a surgical error and I developed lymphadema, which is pretty severe for me, so that has caused me some unwanted stress and medical intervention I don't enjoy! I only had one lymph node removed on the side where I developed lymphadema and that's very rare (again an error by the surgeon). I remain cancer free 8 years post mastectomy and 10 years from my first diagnosis. I didn't have any radiation or chemo, just the surgery - another consideration for me. I preferred not to have radiation or chemo if possible. I hope this helps. It's a big decision and either lumpectomy or mastectomy are reasonable choices. In any case, good consistent follow up is extremely important, so if you're willing and feel good about your doctors - a lumpectomy would be a fine choice. Mastectomy isn't very painful but it is a major surgery and process for sure. Keep me posted if you like on your decision and best of everything to you. Hugs.

It is a personal decision and it is your decision. My surgeon helped me with my decision. I also read some articles out of professional medical journals to back up the information my doctor told me. I was invasive Lobular stage one. I'm 61. My oncotype score was 25 right on the cusp.

I decided to have a lumpectomy. My doctor also took two lymph nodes. I was lucky. I had clear margins and my nodes were clean. I followed up with 4 weeks of radiation. Am on Letrozole now for 5 years. The radiation and knowledge that I would be taking a hormone inhibiter helped with my decision too.

But do you. It is your body and your choice.

Good luck.

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.