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

They have determined that I have stage 1, Grade 2, Her2+ ILC. I will have an MRI next week and they are talking Chemo for a year and Radiation for a week or 2. She said I caught it really early. I am ok with all this and I am a fighter. The part that really got to me was the answer to my question, will I lose my hair?...yes. That tore me up. I will find out so much more after the MRI and the appointment with the oncologist.

@semurrey, what did you learn at your appointment with the radiation oncologist?

@glendy, as you said - you're a fighter. But even fighters have their vulnerable moments. Strange how the thought of losing one's hair can undo us. How are you doing today? Did you learn anything more after the MRI?

Hi everyone- I guess I can say I have my "treatment" plan and am moving forward. I met with a few different radiation onco and I wanted to share first my finds on the proton beam for breast. While my lumpectomy was on the right side, even for those on the left- proton beam is not necessarily better or safer. The specialist from the proton beam center at MGH explained the results as some have mentioned do carry risks like rib cage fractures but also given the expense many centers will offer for breast cancer if they have the availability (cost benefit, insurance etc involved). I also learned that there was a recent UK study done which did show similar outcomes for those treated by regular external beam radiation for a week and for those treated 4-6 weeks. However, at Dana Farber the radiation team is very conservative and this study only studied outcomes for 5 -10 years and they like to see 20yrs. I'm 57 ILC, 1.8c, ER+, HER- and my oncotype was 14. I was relieved that I could skip chemo and decided to go with the recommended 19-20 treatments of full breast radiation (I have small breasts so I guess that makes sense to me). Two weeks after radiation, I will start with Letrozole for 5 years which really scares me but my oncologist said there was no way out of that. My radiation mapping was yesterday and the plan is for me to start radiation on 12/27 (roughly a month since surgery). Hope this info helps - I will stay in touch. xoxo

Good Morning! I go back for more sonograms on 2 spots, 1 on each breast, tomorrow. If they are anything, they will take more biopsies. The MRI was terrible! It seemed like all my weight was on my sternum and created great discomfort that last for days. Hopefully I won't have to do that again or they will have to give me something beforehand. Surgery is still scheduled for January 5th, what type is still a lumposcopy but I'm sure that could change. Will let you know what they find after tomorrow.

So I can see some are much worse off then me...but this is all so new and scary to me I thought I would get advice from those of you who have gone this route 🙁 I was just informed I have focal atypical lobular hyperplasia after my biopsy. The doctor said "this finding less likely needs to be excised further because they have a low likelihood of progressing to an invasive carcinoma" (no idea what that means yet) and she does recommend a visit with a breast surgeon to help decide on best next steps. Are there any comments or advice on what I should request or ask or do? 🙁

Welcome to our board. I would imagine that you will probably be referred to a breast surgeon who will decide whether to remove the cells or just keep an eye on it. ♥️

@amolson I too, have been diagnosed with atypical lobular hyperplasia (ALH) I had invasive DCIS a year prior to the new diagnosis of ALH so I already had a surgical oncologist. I guess monitoring and sometimes medication is recommended for ALH. My surgical oncologist recommended monitoring only for me since I am already on an aromatase inhibitor because of the prior cancer diagnosis. I wasn’t comfortable with this recommendation because I had read that surgical removal is recommended for ALH because there might be cancer “lurking” near the atypical cells. I asked for a second opinion from Dana Farber cancer institute and the doctors there concurred with monitoring and medication approach. So, I guess my advice for you is to follow through with seeing the oncologist and ask questions about treatment options. Write the questions and answers down. Bring a friend with you to also take notes. Do a bit of research about your diagnosis so you understand what your diagnosis means. If you’re not understanding what the doctor is saying, ask for clarification. If you’re not comfortable with the recommendations, seek a second opinion. I hope this helps and please keep asking questions…you are your best advocate!

So the fact that you took your personal time to respond and give me some advice brought tears to my eyes as that is BEYOND kind of you. I sooooo appreciate your time and concern and especially your advice since it sounds like you have been going through some very scary issues yourself!! I know I have to do more research because no one is going to advocate for me better than me but it is good to hear from people like you who have been dealing with it. I think I am going to want to have the surgical removal and pathology to look at all the cells they remove as this look and see attitude concerns me. I watched my mother and father both die of cancer this last year within 6 months of each other and it grows sooooooo fast 🙁 But time will tell as I do more research, THANK YOU AGAIN for you time as it did help and I TRULY appreciate it. Now YOU take GOOD care of yourself and follow your own advice too!! NOTHING but prayers being sent your way and try to have HAPPY Holidays!!

@amolson thank you for your kind words….it’s a difficult journey and thank you for your support as well 💗 Prayers are being sent your way and Happy Holidays to you as well! 🎄🎁⛄️

@amolson, you may also wish to see the helpful posts in this discussion about ALH:
- Atypical lobular hyperplasia: Did you have surgery? https://connect.mayoclinic.org/discussion/atypical-lobular-hyperplasia