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

I was diagnosed at 69 years of aged. I had a 1cm lump but 5 out of 19 nodes had cancer. I had 16 chemo treatments and 25 radiation treatments. I also chose the mastectomy. My surgeon said he got all the cancer , with breast removal. I am now taking Letrazole for the next 5 or more years. . I was hesitant about taking this drug due to side effects. I have been on this med for over 5 months with minimal side effects. My oncologist told me there are at least 5 different meds he could give me( so there are options) don’t be afraid to try any of the meds because everyone is different and don’t effect everyone the same, and knowing there are options helps to ease the mind a bit, I have also learned that allot of the time it is the fillers in the drugs that effect the body, not the drug itself. I hope this helps you in making your decisions and I wish you all the best,

I was diagnosed with ILC 3 months ago. Tumor was nearly 7cm. at largest dimension, ER+, PR+, HER2 -, stage 2A, grade 2, KI 67 1-4% (depending on tissue sampled), no genetic markers or family history.
I had a total mastectomy with axillary lymph node dissection 2 months ago. 2 out of 18 nodes had evidence of cancer but cancer contained in nodes.
I was told by one oncologist that IV chemotherapy was a “no brainer” for my age and presentation of cancer. Another one told me that for lobular with such low KI 67 it would only be 5% beneficial as per the MonarchE study. Instead radiation, oral chemo (verzenio), Tamoxifen and Zolodex were recommended.
I’m wondering how others have made this decision? I am experiencing terrible anxiety and difficulty making these decisions.
So grateful to all of you for sharing here.

Hello, I am new here 🙂

I had a diagnostic mammogram on Friday 1/20/23 and my results are BIRAD 5 🙁 ive been crying so much. I am a single mother with 2 little ones and sometimes I'm ok but then i think about it and i start crying. I am waiting for my Dr to call me back.

Before going to this past appointment i searched my symptoms and it looks like IBC (Inflammatory Breast Cancer) and unfortunately the tech added to my results "Diffuse skin thickening of the right breast which can be seen in the clinical setting of inflammatory carcinoma".

I am so sad and scared :'(

I am currently going through this right now. I had a diagnostic mammogram on Friday 1/20/23 and my results are BIRAD5 🙁 ive been crying so much. I am a single mother with 2 little ones and sometimes I'm ok but then i think about it and i start crying. I am waiting for my Dr to call me back.

I had my yearly screening mammogram on 12/8/22 and it came back suspicious. On 12/15/22 I had a diagnostic mammogram followed by an ultrasound, resulted as BIRADS-4 and was told that day that I needed to have a biopsy. On 1/6/23 I had a stereotactic core needle biopsy. Pathology said negative for malignancy but I was diagnosed with ALH. The radiologist did not agree with pathology because I have pleomorphic calcifications in a linear distribution which he says are suspicious of malignancy. I now have to have a breast MRI and then an excisional biopsy. Everything is so delayed where I live, my biopsy isn’t until 3/6. I am 50 years old and my mother was diagnosed with breast cancer when she was 50. I am terrified, all the waiting is killing me. I feel stuck.

I have absolutely no doubt that you’ll get there too! ♥️

That is wonderful news! Thanks so much for sharing, it means so much to us newbies! I wish you many years of good health and abundant blessings!!!

Kind regards,
Diana

Hi Diana. It has been a little over four years since the date of my diagnosis, three years since my year of treatment and I’m doing great!

Along with my lumpectomy, I had four rounds of A/C chemo, four rounds of Taxol and finished one full year of Herceptin and Perjeta.

I then had the standard four weeks of targeted radiation.

I know this all sounds incredibly daunting but it’s very doable. Just take it one week at a time and do the best you can.

I honestly feel fabulous. Currently I see my oncologist every six months along with having bloodwork and my annual screening mammogram.

You’ll be okay. It just takes time. 🙏♥️🙏

Hi Lisa,
I am newly diagnosed with triple-positive ILC stage 1 with clear lymph nodes, lymphovascular, and margins. I recently had a lumpectomy. Will see my oncologist soon for my treatment plan. I was wondering how you're doing. 😊

I had invasive lobular 2a no lymph nodes. Had left side masectomy no reconstruction. Didn't want more surgery. They alternate every year with MRI because I have very dense breasts and it is harder to find on mammo alone. You might ask your team if that could be done for you. They also do a diagnosticmammogram we don't have 3D ones in the Maratimes Canada.
I get a visual check every 6 months and they felt something by arm pit which she thought was scar tissue but sent me to get an ultrasound to have in case something started to grow. Ultrasound turned out fine. So they know lumps and bumps and which are bad ones. I have fibrodenomas in right breast. I have a little lymphedema in arm pit and do espxcersizes to help with arm tightness. I hope you are doing well and I am two years out from treatment and it gets a little easier. I try not to worry to much and it helps knowing for 5 years a Dr sees you every 6 months. Take care