Just diagnosed with invasive lobular carcinoma (ILC): Any advice?

First, prayers are with you and your family. I was diganosed in March 2023 with ILC, Stage 1a, no lymph node involvement, HR/PR+, HER2-, ONCO DX 10. I had an MRI, following my initial diagnosis, and they found IDC on the right side, also Stage 1a, no lymph node involvement, HR/PR+, HER2-, ONCO DX 18. I was 52 at the time. I chose a double mastectomy, grateful I made this decision early on, with the ILC diagnosis. Turns out once my mastectomy was complete I had two focuses of DCIS in breast with IDC, and LCIS and ADH in the left breast. I had annual mammograms, and at times Ultrasounds, at a very progressive breast cancer center. It is very scary. I have recovered well, I take Anastrozole daily. The mental game can be a lot, but I workout, control my diet, and almost completely avoid alcohol. Go to the Lobular Breast Cancer site, they offer so much wonderful information. You've got this, one day at a time. I too had small children, 10 at the time. They were wonderful, grew up a little faster, but they are doing well. I encourage you to reach out to anyone who will listen, the emotions run high. You will do great, ask lots of questions and advocate for yourself. I will say I chose the mastectomy because the thought of going back for Mammograms, MRIs and Ultrasounds every 6 months was overwhelming for me. My mastectomy went well, slow recovery, but I'm feeling good 18 months later.

Hi, I had DCIS stage 0 & had a right breast mastectomy w/no chemo or radiation. After yours w/no chemo or radiation, were you put on harmone therapy? I was put on Anastrozole 1mg & could not take it, stopped after 3 wks. Not taking anything right now.

Hello, Joy here. Age 75. RN retired. Just diagnosed today via Breast Surgeon phone call regarding core biopsy via Ultrasound. To be continued...... (scared).

@joy2026 Hi Joy, hope the breast surgeon gave you some information that gave you a clue as to next steps. A Friday phone call can be tough with the weekend before you. You’ll probably have some options, there’s lots of women here that can share experiences.

I was there too in 1/25. ILC stage 1A grade 2 no lymph node involvement, oncotype 22. It is overwhelming at first but good resources exist to help. My breast surgeon gave me this book which had been donated by a breast cancer nonprofit. It was a lifesaver. Helped me make decisions and understand details.
You can buy it on Amazon.

Judy C. Kneece
Breast Cancer Treatment Handbook, 10th Edition (2022): Understanding the Disease, Treatments, Emotions and Recovery from Breast Cancer

I also choose a bilateral mastectomy. I didn’t want to worry about the other breast, I wanted identical breasts )which were reconstructed,) and I talked with a plastic surgeon before deciding , who told me he can’t do much with skin that has been radiated. I knew clean margins or getting all the cancer was critical and because ILC grows in a bone like manner, and hides in dense breast tissue, I felt that was the best option. The book I mentioned has an entire workpage of questions to help you decide what is best for you. My surgeon said from a surgical perspective I had a 2% chance of reoccurrence if I chose a mastectomy and a 15% chance with a lumpectomy and radiation. All these facts with the books help guided me. I wish you the best. It is scary but HR positive Her - ILC is very treatable with good outcomes. I take letrozole for 5 years and like others I stay positive, I exercise, meditate, lift weights, walk, travel and embrace my body with love. Give yourself grace and take deep breaths. You aren’t alone.

@joy2026 You’re a retired nurse so are more aware of medical issues than I ever was. My suggestion is to read as much as possible, whether books (not older than 8-10 years), anything you can find online. Ask friends because many our ages have ‘hidden’ cancers they do’t want to share. Because of your medical background, you’re probably able to get into the weeds and still get a clearer picture than I was able to.
At 80 I had a unilateral mastectomy 3 months ago, REFUSED reconstruction because at this age, I have no need for another boob! I have contraindications on both sides of the A.I. meds so am just sailing along knowing that I’m so much better off than the majority of women my age.
At some point that is sooner rather than later, my life will end in some unknown way. It could be cancer, car accident, heart attack, whatever. I have no desire to be immortal and have lived a relatively easy life. My best to you to discover your peaceful place where you can process all this and make a decision that is comfortable for YOU! I send you hugs and peace.