invasive lobular carcinoma

I was diagnosed in 1/25 with ILC. I chose a bilateral mastectomy because the surgical option to do a lumpectomy and radiation still resulted in a 15% reoccurrence rate compare to a 2% rate if I chose bilateral mastectomy.

I highly recommend ordering the Breast Cancer Treatment Handbook 10th eduction by Judy Kneece from Amazon. It was so helpful in clarifying the nature of ILC and laying out the options carefully. In the back of the book is a one page list of questions that help you make a decision.

Invasive Lobular Cancer is called the sneaky cancer and it makes a lot of sense to attack it aggressively. I am fortunate in that I caught mine before it was in my lymph nodes and the surgeon got clear margins. It was also HR+ HERS- so I am on hormone blocking medication, Letrozole, for 5 years. There are side effects but it will reduce the likelihood of reoccurrence and so I am sticking with it.

I also recommend working with a physical therapist who specializes in working with breast cancer patients who have cancer treatments. Staying physically active and strong is critical to overall health and staying positive in the face of it all is so healthy.

I wish you well. I hope the book can help provide you with some guidance to give you more peace of mind.

Thank you so much. I will order the book right now. It is so scary. I have spent hours reading on the internet since my diagnosis 2 days ago.

@gailmarienewton it’s so scary when you’re first diagnosed. It’s going to be ok - you’re going to be ok! I was diagnosed with ILC Thanksgiving 2024 and spent almost all of 2025 with surgery (I did double mastectomy- want to treat it aggressively and have the same boobs after reconstruction), chemo, and radiation. My cancer had gone to the sentinel lymph node but not to any other lymph nodes so I pray I’m done (haven’t had reconstruction yet). I came to say that the scariest time of all is where you are right now. If you are a prayer, praying helped me tremendously. I was able to stay positive throughout (after a couple weeks of just trying to wrap my head around everything!!:). I’m praying for you - that you’ll have peace throughout the process. It really gets easier once you start doing things to be rid of the cancer. This group helped me (and still helps me) so much!!

Agree - scariest time for you is right now...followed closely by waiting for any path results! In any case, you've got this! You're taking the right steps to educate yourself and find your community. From the social groups I have joined I like Mayo best; great educational info, active community who range from newly diagnosed to survivors of 40+ years, and moderators to direct us to additional groups or provide links that will help us make choices. Good luck with your journey!

OH - I had Atypical Dutal Hypertrophy (ADH) with a secondary diagnosis (path from lumpectomy of ADH) of Lobular Carcinoma In-Situ (LCIS) in right breast. Having LCIS increases everyones risk of BC in the other breast. I had genetic testing and my lifetime BC score was 35% (that's like 3.5 times higher than the average woman) and since LCIS can evolve into the invasive/metatsatic form, and it is sneaky - hard to detect due to its linear form versus spherical, I had a prophylactic DMX. Path was clear on both breasts and I did not require radio or chem - or axillary dissection. Some cases of LCIS never become invasive - but I had several aunts, cousins on my maternal side who died with BC and had two non-BRCA mutations that are suspect for BC. While DMX might seem extreme to some people my new lifetime risk score is 2-3%.

I will probably not have anymore BC related surgeries; I do worry a little since the lobular form is difficult to visualize and while mine was "In-Situ" I question whether we really know if some of the cells might not have snuck out. I don't focus on that because I am told that chance is really low.

I am happy with my choice of DMX. I chose to remain flat (called an aesthetic flat closure) - once again to avoid further surgeries from rejection or rupture of implants. Please be aware that there is standard replacement of implants due to capsulation, calcification, and contracture around the tissue of the implant (natural process of any embedded device) that happens years out from the initial implant. From other threads (Mayo or other?) I have learned that this is not typically discussed when first offered implants - or sometimes after until a woman complains of hardness, pain, etc. With Best Wishes for clarity in making your decisions and a good prognosis.

You're going to be just fine! As others have said, this part is the scariest, but once you wrap your head around the diagnosis and get to work, acceptance comes. I thought I was going to die when I got diagnosed (June 2024)until I educated myself. I had a single mastectomy, 16 sessions of chemo, a second surgery to get clear margins, 25 sessions of radiation and now on Anastrazole to prevent a recurrence.
The cancer is all out of me!
I did not have any reconstruction surgery and am living my best healthy life working out with weights, walking, eating healthfully and being thankful everyday.
This forum is super helpful and supportive. You are definitely not alone and are SO important in this world. Hugs to you!

Thank you all so much. I am worried that I will not make the right decisions for me and appreciate any help. I had a biopsy after 2 mammograms and ultrasound. The invasive lobular carcinoma is a Grade 2 and there are some cells outside the core that are LCIS. I am ER+ and PgR+. I am leaning towards a full mastectomy...I do have leukemia, CVID, and anemia. I am very active, eat healthy, and exercise...just very fatigued since August. Wednesday....more tests...MRI and another ultrasound. PET scan coming up....probably not until Saturday because I have cancer treatment on Thursday for leukemia which makes me ill for a couple of days. But...always smiling....just worried.

@gailmarienewton My ILC was ER+, PR+ Her2- Stage 2 Grade 3. I also had SO many doubts about making the right decisions for myself. My oncologist recommended neo-adjuvant chemo to shrink the tumor BEFORE surgery and pushed to begin in a week , and I chose surgery first after a second surgeon opinion. Then when the margins weren't clear after surgery, I wanted to kick myself thinking I made the wrong choice. I then had adjuvant chemo.
Still, I blamed myself thinking I ruined my chances for reconstruction.
A year later I read a study indicating that adjuvant surgery for ILC was better for predicting less recurrence than neo-adjuvant surgery. Who would have figured? And I'm happy being flat as there are risks with implants.
I think we all make the right decisions for ourselves and I would encourage you to check inside with your intuition to "feel" into what's right for you. You can't go wrong!

Thank you… dad I did not know….

@gailmarienewton Good luck with all treatments and after exploring all options trust your gut; you know best what your body can do and what treatments you feel comfortable with.

Maybe start a new question/conversation with a subject like "leukemia and ILC advice"? One of the Mayo mentors will probably read this soon and may suggest the same, or refer you to past thread on leukemia and ILC - or post links to information for your dual diagnosis. Keep smiling and know we are here to support you. Have a great day!