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

I think it would be helpful to have a by-line for each respondent (with permission of course) similar to the Johns Hopkins forum, which outlines type of bc, staging, treatments, etc. Since so much of this seems to be linked to age at diagnosis, might be helpful mentioning that as well.

2019: stage IIIc ILC (Left) at age 69: surgery (modified radical mastectomy for 5 tumors, clean margins, but 10/16 nodes diseased): chemo and radiation, lots of it, no side effects). 2 years Tamoxifen then Anastrazole since 2021, Zometa for 3 years after radiation. If I had the Oncotype test, I don't remember it. I just did what I was told at that point. I have my yearly Mammogram in June and yearly MRI in December (so, some kind of screening every 6 months)...Visits with radiation oncologist, breast surgeon, breast oncology and primary care (one of these every 4 months). I also check in with a cancer hospital once a year. They all say "keep doing what you're doing" and for right now, I'll go with that. Please, please, explore all the options for not only acute care, but aftercare, which in some cases might be the most important part.

I am also interested in recurrence. Having a mamogram only is also my biggest fear--I read this cancer is hard to detect with a mamogram until it larger. Have you been given the Oncotype DX test? I am 66yo. had a suspecious area on my right breast in July 2022. Left breast was fine. 8/23/2022 I had an ultrasound and they could see nothing so they ordered a MRI. I am highly clostrophbic and put off the MRI until 5/2023. The MRI with and without contrast showed an area calcifications on the right breast but also showed an enhancing 5 mm mass on my left breast. June 12, 2023 I had a contrast enhanced mamogram and ultrasound which showed a 6mm enhancing mass on the left breast. On 7/10 I had a MRI guided biopsy which which ultimately led to a diagnosis of Invasive Lobular carcenoma, Nottingham grade 1-2 and ER/PR 100% positive and HER ngative. I had a lumpectomy on 8/21. Two lymph nodes were negative and my tumor margins were clear. If I remember correctly, my surgeon told me I would most likely have a mamogram in 6 months and than yearly. At the time that frightened me because I read my cancer isn't detected with a mamogram until it is larger. I see the radiologist for the first time tomorrow and the oncologist on Wednesday. I found out about the Oncotype DX test on this site so I asked the nurse that the encotype DX test be preformed weeks ago. She said something to the effect that my tumor was too small for the test. What does the size have to do with it? It is used to tell me my chances of reoccurance which mentally is helpful. So, she called about a week ago and asked if I would be interested in participating in a study (my surgeon had mentioned it to me saying the radiologist may ask me about it). Before I can participate I have to have the Encotype DX test and I have a score of less than 18--not sure what it means. Funny that now it is not too small!! I am considering the study since I can quit it at any time. The study involves patients 50-70 having no radiation for ILC patients with small tumors. You are required to take the hormone blockers for 5 years. It is phase 2 of the study. I believe they already finished patients 70 and above. My mother had 1 breast removed at 73 and the other at 77. she is now 84 and cancer free. She did not take the recommended 5 years of Tomoxifen due to the side effects. On 1/21 i was diagnosed with Ocular Malignant Melanoma. A very rare tumor behind my left eye. I had brachetherapy and am cancer free. This cancer has a high rate of metastasizing so there is a molecular genetic test that was given to me as part of a study. You get a score of a 1 or a 2. Luckily I was a 1a!!! I have a very low chance of it spreading. If it had been a 2 I would have a 70% chance of it spreading ot my liver or lungs. My testing would have been more frequent and my stress level would have been very high. That is why I want the test for this cancer. If it is high I will consider different treatment. I am sorry this is so long and i wish the best for everyone on this site.

Hi @poesmom, I am in my 70s too (70) and I also had ILC in one breast stage 1a. I had IDC stage 1a in my other breast. I had a bilateral mastectomy and at my age I chose not to go through extra surgery for implants. I wanted you to know that I did not have chemo or radiation either. I was relieved not to have it but wondered if it would have given me some extra protection. But I went to Mayo Rochester for my surgery and treatment so I figured I was at a place on the forefront of treatment options. My ILC was triple negative and even so the oncologist and tumor board agreed on the no chemo decision. I am on Tamoxifen ( I have osteoporosis so that's why Tamoxifen even tho I am years past menopause) for the IDC which was estrogen positive. In the Breast Cancer Survivorship area of Mayo I was told that eating 7-9 fruits and vegetables a day would help to prevent recurrence and also daily exercise is very important so I am exercising and eating those 7-9 fruits and vegetables every day. Our goal on this site is to be a bc Survivor and I am sending out love and Survivor wishes to you and all on this site.❤️

Thanks. I'll probably pass on reconstriction. I'm 74 and can live with a prosthetic. Nice to know maybe no chemo.😎

I totally agree!! I have learned how different ILC is from IDC, and few articles, blogs, etc, differentiate.

I had ILC and had a bilateral mastectomy. I had no radiation or chemo. This was 3 months ago and I go for reconstruction later this month. 🙏🙏🙏 for you.

Spoke to surgeon today. Since mass sort of goes half way around and biopsy showed cancer at both ends of it she said mastectomy probably be better than lumpectomy. I'm ok with that. Who needs 2 boobs anyway at my age. All I'm wondering will I require chemo too. NOT !ooking forward to that at all! Been reading and they say they've been overly aggressive using chemo over the years and now they've decided it's not always neccessary. Got my fingers crossed😶.

I was diagnosed at stage 4 (bones) with no symptoms. Lobular is pretty sneaky. No lump. Nothing measurable but it's there. I'm on meds and feel fine.

My doctor found the mass doing my annual physical. Biopsy was yesterday, pathology report came today. LBC. Scary. I'm 74 so I got away without it for a long time. But, it caught me. Haven't spoken to the oncologist yet about treatment options. I'm assuming radiation and maybe chemo. I'll find out soon enough. DAMN! No symptoms at all. Glad to have this forum.