Diagnosed with ILC . Thoughts on bilateral mastectomy?

I had some lobular cancer and had a double mastectomy at 63 (ten years ago).

You might want to look up the Lobular Breast Cancer Alliance. They have named tomorrow as Lobular Cancer Awareness Day and have some virtual events that might be informative. There is need for more research! Here is the announcement on the website:

"The first Global Lobular Breast Cancer Awareness Day on Oct. 15th is coming up this Tuesday! With more than 20 events in 10 countries, this inaugural awareness day is set to have tremendous impact in the US and around the world. From live events, educational webinars, lunch and learn sessions, mini-conferences and more! Be sure to check our map online here for in-person events in your area."

Ty!!

I was 60 at diagnosis and chose a DMX due to statistics showing a higher incidence of an initial occurance in the other breast. And after the surgery, a small tumor was found there as well. I had concerns about density and achieving symmetry as well as the ongoing concern of a new occurance. I've always been glad I chose this option, but your situation may be quite different.

I had ILC and LCIS, along with IDC at the age of 52. I had a bilateral mastectomy, and I am so glad I chose this option. The thought of biannual screening with mammogram/ultrasound and MRI was overwhelming for me. I found out that ILC can increase your chances for bilateral breast cancer. Although my tumors were small, Stage 1a, they were invasive, luckily no lymph node involvement. I did well with my mastectomy and reconstruction. I now take Anastrozole, and while it not always the easiest, I seem to tolerate it fairly well. While I was offered lumpectomy for both tumors, I chose the mastectomy because I knew I would have high anxiety every time I went for screenings. It's really a personal preference and the survival rate for early stage is not any higher with the mastectomy as I'm sure your oncologist will or has explained. Good luck, you've got this!

My diagnosis was very similar to wendysiegler. ILC, LCIS and IDC. Stage 1a on those tumors, no node involvement. I had ILC in one breast and IDC in the other. LCIS in both. I chose the bilateral mastectomy for the very same reasons as wendysiegler. I was 70 at diagnosis and decided to not have implants after hearing from gals I know who had problems with their implants and I am happy with my decision. My advice to you is to trust your instincts. I prayed about it and I had a strong feeling that a bilateral mastectomy was right for me. After doing pathology on the removed tissue they found DCIS also. That did not show up on the mammograms or breast MRI. How long till that may have shown up? Who knows? So trust your feelings about what is right for you. Sending love and healing wishes to you. I concur with the thought that you've got this! ❤️

Remarkable how our diagnosis is so similar. I too, had DCIS in the right breast, two foci, never picked up on mammogram either. Dense breasts are so hard, MRI did not reveal it either. I agree 100% follow your instincts.

I wish I had made the same decision. It took me a good 2 years to decide on DMX. Now I have to wait a while for surgery because at this point it’s considered prophylactic.

I was diagnosed with DCIS at the end of August 2024, I had a lumpectomy and they removed the lymph noid also no cancer in the lymph noid it was also 1a as well and will be doing radiation treatment in a few weeks
My surgery was Oct 1st., it’s not been easy al lot of stress involved, I’m wanting to know what to expect from the radiation treatment, I have many serious medical issues and I know everyone’s body responds differently to different treatments. I’m 62 yrs old and had cervical cancer in my early 20’s had to have a hysterectomy
My body went through some major changes at a ver young age. So any information or advice would be much appreciated. Thank you

Radiation may sound scary but it’s an easy part of cancer treatment. Look under topic “anxiety over radiation “, there are good advices on how to protect your skin during the treatment. I used fresh aloe vera right after each treatment ( in the changing room) and reapply a few times a day. Make sure you continued with aloe vera/topical cream for at least 2 weeks after treatment is complete. Don’t worry so much about radiation treatment. You’ll be fine just like the rest of us. I’m sorry that you had cancer at such a young age. But now you’re not alone. We are fighting this battle together. There are quite a few sisters here with knowledge and experience to help you through. I found comfort and strength in this forum and I hope you will too. Hugs.

Thank you so much, this does help me. ❤️