Diagnosed with ILC: Any reconstruction input, implants vs DIEP?

I certainly understand how you'd like more information. Put DIEP into the search engine in the Breast Cancer group and see if some useful information pops up. I'll keep an eye out here as well, and if you don't get responses will see what I can do. I don't have first hand knowledge, or I'd share it.

I was diagnosed with ILC last February and felt the same way. I also opted and had a bilateral mastectomy to avoid the cancer from coming back. I was also stage 1A grade 2. Following biopsy of the sentinal node after the mastectomies I had clear lymph nodes. I opted for gel implants because recovery from flap surgery was so much longer. I am also 70 and felt this gold standard approach was right for me. Expanders were inserted above the muscle wall immediately after the mastectomies were performed that day. Two months later the implants surgery was done and both surgeries were pain free. My plastic surgeon used fat grafting from my body to soften the implants.

There is a great book you can find it on Amazon that really helped me make my decisions.

Breast Cancer Treatment Handbook: Understanding the Disease, Treatments, Emotions and Recovery from Breast Cancer
Book by Judy C. Kneece

I would highly recommend getting it to answer questions and guide your decisions.

Hope this helps.

@wews
Thank you so much for sharing. It's alot to process, but hearing from others with a similar diagnosis has been comforting. It sounds like you were very pleased with your decision and are in a good place. I will definitely check out the book - thank you again!

Thank you for sharing your experiences with ILC. I too was diagnosed with ILC 2 years ago in my right breast, (7mm) oestrogen positive with clear lymph-nodes.
I had radiation with 5 bouts of radiation and have been on Anastrozole.
My biopsy also showed
0-e Cadherin, we much apparently is a significant marker for ILC.
I’m very interested to know if any of your diagnosis also emphasised the loss of e-cadherin.
I’m very interested to know if anyone’s diagnosis has also indicated ‘loss of e-cadherin.’
Thank you,
With kind thoughts
🌻

@otas My pathology report did include the note on E-cadhrin. That is how they determine that it is lobular cancer. "E-cadherin shows loss of membranous staining in the invasive carcinoma, supporting a lobular phenotype."

@otas Yes, my diagnosis of ILC indicated loss of e-Cadherin also. I looked it up and it seems to be a hereditary mutation.

Thank you so much for your response in relation to e-Cadherin. I only found out about it is when it was mentioned in the pathology report. What is interesting that neither my breast specialist nor my oncologist discussed this diagnosis with me. I had no idea that it was an inherited mutation.
I have a daughter and surely this should have been discussed with me.

@otas Just so you know, nobody discussed it with me either. I read your post, became curious and had to look it up myself. I didn't even know that the loss of e-Cadherin determined that it was lobular!

@otas thank you for sharing your ILC experience. Like others have commented, I saw neg for e-cadherin on my pathology report and looked it up. In fact, I looked up every term on that report to learn more. That led to finding many of the possible, as well as the rare, gene mutations. So many factors to consider with ILC.

I had the DEIP flap surgery this past June. The surgery lasted 16 hours. In addition to taking the fat from my stomach, they had to take a vein from my leg because there was not one big enough in my stomach. I had a lot of pain and am going through physical therapy now to help with the back pain and to strengthen my core. While everyone is different and has different pain levels, I would not do this surgery again. I am 60 years old.