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

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.

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 queenofjacks,

Just had first mammo and it did not hurt at all - the technician was very skilled.

Would you mind sharing a bit more - did you get an oncotype test and if so, what was your score? (We have some similarities.) Thanks 🙂

Thanks for the feedback! It sounds like you've got a good support system. That's great. I think you can reassure your kids that nowadays breast cancer is very treatable. I don't know your situation, but if it is discovered early, recovery is 95 - 100%. Depending on their ages, maybe you can consider making them part of your team - each could take a couple of chores to do to help you. I just Googled "mommy has breast cancer book" and there are several that popped up. There's even a book called "My Parent Has Cancer and It Really Sucks" for older kids. If you've got a public library in town, the librarian can probably help you. (My mom was a librarian, so I have great faith in them!)
The word "invasive" is really scary. I was shaking all over when I read that in the biopsy report. But it turned out that the actual tumor was only 2mm - bigger than a BB but smaller than a pea! I hope yours turns out to be small also. With ILC they may not know the exact size until after they have taken it out. I will say that the lumpectomy surgery was not as bad as I had feared. I had had my appendix out a number of years ago (the old-fashioned way, not laparoscopy) and that was considerably worse than either lumpectomy. I was able to take off a week from work to recover from the lumpectomy, which was good, but I am 69. I did nothing but rest for two days, then did some work from home on the computer a few hours a day for the rest of the week. If you are still teaching and have kids at home, you must be a lot younger than I am, so will probably recover faster! Good luck. I am praying for a good recovery for you.

Thank you so much for your kind words and for including me in your thoughts. My mind is full of questions. Sadly, the state of Texas only gives its teachers an HMO so I am limited in choices but so far getting the referrals has gone smoothly. I meet with the surgeon on Tuesday and I’m sure I will have even more questions. I have many friends and a sister who have had breast cancer and I’ve already reached out to them for advice on how to handle everything. The hardest part of the whole process for me so far has been watching my kids with the news and not being able to fix the pain that it has caused them. I just have to keep a positive mindset and trust that the surgeon will get clean margins, if nit the first time, then at least eventually. I feel like I still have so much life left to live!

Hi kyerigan! I have been thinking about you the past two days. How are things going? I was overwhelmed when I was first diagnosed. Thankfully, my husband was really there for me. He did not give me advice, but just lots of hugs. If you have someone you trust that you can talk to, that would be a good first step.
Probably you have been told to see a breast surgeon. If you are part of a medical group, such as Mayo, Kaiser, etc., they may just assign you someone. Be sure to take advantage of any extra services they provide: nurse navigator, social worker or counselor, etc. If you have PPO insurance, as I do, and can choose your own surgeon, that can be an advantage, but it can also add to the stress. I was fortunate that my primary care provider recommended a good surgeon, although later I met a female surgeon I would have preferred, but the guy I went to was fine, and very nice and helpful. You want someone who will listen to you and will answer all your questions. Look at online reviews, ask friends or relatives who have had surgery, definitely ask your primary care physician for recommendations. You will have many decisions to make, the main one probably being between getting a mastectomy OR a lumpectomy plus radiation. This was one of the hardest decisions I ever made in my life, and I was angry that the doctors didn't just tell me what to do - I knew nothing about breast cancer, and they have years of education! Why should such a big decision fall on me? There is an app you might try, called Breast Advocate, which has a treatment wizard to help you decide which surgery may be best for you, but ultimately you will have to make that decision yourself. I consulted four different doctors, plus lots of friends who had had lumpectomies or mastectomies, and I read as much as I could find. Maybe this will not take you as much effort. I gave myself six weeks to make the decision, because I was so stressed about it, and the surgeon told me I did not have to act immediately. I finally decided on a lumpectomy plus radiation, but again, everyone has her own situation and has to make her own decision. The big problem is that both choices have the same outcome as far as reoccurrence is concerned, so doctors are hesitant to recommend one over the other. (Be aware - I had to have two lumpectomies, since they did not get clear margins the first time. But I had pleomorphic LCIS, which requires clear margins. I don't think regular LCIS does.) Keep us posted. I hope your journey is a bit smoother than mine.

Just diagnosed today. How’s your journey going?

@beachlover71, will you have radiation treatment? How many?

That is the exact name for it. Just type it in the FB group search. Sorry you need to join😔

They preliminarily told me that my MRI showed no axillary lymph node involvement. But they will still biopsy my sentinel lymph node during surgery. Technically an ILC means it has spread within the breast tissue. What I was referring to was spread into my lymph nodes. I hope that helps clarify.