Diagnosed with ILC . Thoughts on bilateral mastectomy?

I was diagnosed with invasive ductal carcinoma this past spring. I just finished 18 weeks of chemo and have chosen to have bi lateral mastectomy. I did DNA test which was negative. So my cancer is just an aggressive unexplainable event. Chemo helped shrink the tumors they marked but surgeon said my breast is dense and other areas lit up on mri, too many to mark. She recommended mastectomy of left breast, so I decided to do bi lateral. I never want to go through this again. I’m meeting with plastic surgeon today. So surgery will be scheduled for this month. He will be in room during mastectomy and immediately start reconstruction. I’m nervous but have been on forums that calmed my nerves. Four weeks recovery and I’ll have two drains for two weeks. I wish you all the best.

Hi @kakc19, Like you, I have ILC and an additional complication of a second health issue, lung cancer. I'm waiting for my single mastectomy surgery date. If you don't mind sharing, have you made a decision? Has your surgery been scheduled?

I went to MASS GENERAL
and Dana Farber and both suggested lumpectomy.
Lumpectomy this Friday and 4 weeks radiation after per Dana Farber. MGH was going to do only 5 days.
I have a plasma cell disorder so I go to DFCI anyways.
Best wishes to you.

You are in good hands, best of luck to you!

With ILC I would go with a double mastectomy because ILC is so hard to see on imagery. @kakc19 did you see Metzger at DFCI? They must know what they are doing.

Both MGH and DFCI agreed with treatment plan, and I believe in both hospitals so I am good with my decision.

Now that MGH and DFCI are parting ways their opinions may be more independent than they were when I was making decisions!

ps @kakc19 I could not edit (distracted by election) and meant to say that "I went" not "I would go" with BMX. I had some ILC so was just recounting my experience. Sounds like you have a good plan.

My oncologist told me to always remember that I would not make the wrong decision, I would make the decision that was right for me. That really helped when I finally settled on my plan. I could have done either lumpectomy w/radiation or dmx. In the end, I feel I made the right decision for me. Best of luck to you. Sending healing wishes.

The first thing that I can tell you is you have to do what is right for you and what you feel most comfortable with while taking the doctors recommendations to heart.
2 weeks ago today I had the final surgery for breast reconstruction after having bi-lateral mastectomy and expanders placed in June. I am 54 years old so went with reconstruction. I had Trip Neg in my right breast, after 6 months of chemo the tumor had shrunk but was not completely gone, I have been on immunotherapy since that time as well and have 3 more shots left to go. I also had dense breast tissue and multiple biopsies (4 over that 6 month period) because I also get little fatty lumps in my breasts regularly. I had the DNA test which was negative. All in all I can tell you from my experience and the peace of mind that I now have, that it was the right choice for me, but again, it is something that you must decide is right for you.