Today is Day 1

@liskinpa you are right. I looked at a lot of studies just now and here is a typical conclusion: https://pubmed.ncbi.nlm.nih.gov/9367019/

"Conclusions: Invasive lobular carcinoma can be safely treated with breast conservation with no difference in local recurrence or survival. In the absence of a suspicious finding on clinical or radiologic examination, routine contralateral breast intervention is not recommended."

I was diagnosed with lobular and ductal 8 years ago and was told mastectomy would be better (and I wanted that). I was told lobular was "multicentric" and "marched in a line" without forming a mass, so it was hard to image. However studies do not show a worse outcome with lumpectomy for small low grade tumors and possibly others, depending on other factors like ER, proliferation, Oncotype etc.

I tend to write with a qualifying "I believe..." But appreciate the correction so that others get the right info! Apologies!

Hello All,

I did not repost the video. Just shared the link. So, moving on to the original poster masterfuldogtrainer needs us now. I cannot express in words what you must be enduring right now. You most likely know more than we do about chemo, side effects etc. How may we help? I'm more than willing to do whatever I can to help thru this journey. When you have the time & energy please tell us about your choice of name masterfuldogtrainer. I bet there is a great story we would love you to share when/and If. Many Healing Prayers. xoxoxo

@bcwarrior, YouTube videos play in a post when placed on their own line. I moved the link beside the text so that it appears as a link only again.

Thank you for bringing this conversation back to @masterfuldogtrainer. I've added the @symbol to the username so that @masterfuldogtrainer gets an email alerting her to your kind and thoughtful post.

Hi , sorry you're facing this and for the rest of us who is there or have been there.

I know the feeling of fear and helplessness and being lost in all that.....at first!! Its overwhelming to say the least. However, you will
conquer all of that with your strength and determination, and with the help of this board!Do your research, ask lots of questions ...you will get through this!! Please stay strong!

gpigford I love your wife's saying. I'm sending all of us lots of prayers🙏🏼 and warm thoughs!!!

Wow, I can imagine how you feel. I too was diagnosed with ILC 2023 right breast removed. Preventive left breast 2024. Now 2025 found spot on chest wall. But Through It All We Live! I hope you can find faith in the Most High because his spirit is within us, and he has never left us or forsaken us even when we don't deserve it. I want to encourage you all that things will get better. My prayers for your family strength from " I LIVE".

The I in ILC means invasive/infiltrating having grown outside the milk producing lobes deeper in the breast closer to chest wall. .

Do you have your biopsy report? Start with that. This is a pathology/histology analysis about the cells they gathered. Read it thoroughly. Print it out and underline circle, etc. Write down your questions, Like what so certain abbreviations mean, what's the definition of ----? what is the significance of _____?
First you will learn cellular Grade, which is different than overall Stage of cancer.
Look at the GRADE rating system which consists of 3 items :
a) tubular differentiation,
b) nuclear pleomorphism
c) mitotic count.
Each has a score 1-3. for a total up to 9. The mitotic count tells how fast the cells are growing. Lobular is thankfully a very slow growing type of cell. Usually its 1 of 3. You may also have some lobular carcinoma in situ present these means the some of the carcinoma is still within the lobe (in situ). Margins is how much healthy tissue is between the in situ and or the invasive (outside lobe). It may be considered precancerous. This is something to ask your MD.

Focality tells how many tumors are found. Usually 1, but lobular often breaks off because is is like a ribbon rather than a clump of cells, so 2 or more can be found. Ultimately the size of each, not the number of tumors, determines the Staging. New info is >2cm is border between Stage 1 and Stage 2.

If you have surgery which will include identification of and gathering of sentinel lymph nodes will be in a second/final staging. Some oncologist give the stage before surgery, but usually the findings are analysis after surgery. But the Grade is given of the cell characteristics in the first biopsy report.

Hormone status is next. Usually most lobular carcinomas are hormone positive at least estrogen, But likely may also be positive for progesterone (min were both ER+ (Estrogen receptor positive) and PR+ (Progesterone receptor positive).
More rarely, HER2+ often HER2 is negative (HER2-) in lobular carcinoma. Look at those numbers.
All this information determines treatment such as more tests like MRI, lumpectomy vs mastectomy, radiation and medication usually AIs aromatase inhibitors. At Kaiser I did not meet an oncologist until after surgery. Often surgeon is first MD who will determine what is needed.
If you are inclined you can look up stuff online which leads to more questions for MD or come back here if you can't wait till that appointment. or want to discuss feelings, information whatever.

Warm wishes for this journey. Lobular carcinoma is only 10-15% of breast cancers. and the ribbon like characteristic mean it is often hard to detect, therefore identified later at a higher stage and there is less research on it.
So we are a unique group. Find and join breast cancer support groups. Most are online zoom. Mutual support is special and I learned a lot from my group members' experiences. But only one other woman had lobular. But I personally found I did not have a moment to spare until well after my surgery to join a group.

MORE RESEARCH is needed. but they tend to treat it based on hormone receptor status, same as ductal. but there is more to our story. Good luck to all of us.

@ldennis23 , Hello, question for you. In 2025 how did you find the spot on your chest wall if at that point you had a double mastectomy and presumably you were not getting mammograms? And what is the treatment for the spot on your chest wall? Thank you for sharing!

@revalenz
Hello,
A week or two earlier and friend of mine was telling me his friend died from breast cancer just having a normal conversation. I think about 2-3 weeks later. I was sitting in my bed and I heard this voice say, check your breast. When I checked it , I felt a large lump. I immediately went to doctor. Test were done and it was breast cancer. I had to have a mastectomy on right because there were other spots they didn't recognize or had idea what it was. I was diagnosed with Lobular Carcinoma. I did not have chemo or radiation. .I would not have work with my score. So they put me on aromatase i hibitors for 5 years. Which to me is horrible. I have been through 4 of these with bad side effects. Now am on letrozole. Yes I was getting mammograms they were clear. I missed 2 years without one then this happen in 2023.

Check out diet and fixing your environment for help going forward.