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

@gailmarienewton
Sorry to hear about your struggles. After my right mastectomy I was on antibiotics for weeks! I had a final drain which they didn't pull out for ages.
Radiation was easy, 30 early morning appointments. I was able to cut down on work hours so I went home and napped.
The issue with this disease, no matter what stage we have, is fear. Your doctors are taking good care of you by ordering the PET scan. I was and am terrified each time a new blood is drawn or imaging ordered. As you know, it's to track our progression. I ask for Ativan before each MRI. I hate that machine. It gives me claustrophobia.

In the meantime I emphasize ME. I try to do things I enjoy, like taking daily ballet classes, skiing, spending time with family and friends. I have also dropped a few friends !! I realized those relationships were not adding value to my life. I seek out therapy to help me adjust to the new me with a definite expiration date. I try to emphasize the positive and have become more tied to my religion. Hope you find your path as well. Good health to you and blessings.

@lls8000
Thank you for your suggestions. I appreciate your response. I felt so alone with the progression and mutation of my disease. Your links are very helpful.
Wishing you continued good health and blessings.

@vissdoc, you may also be interested in this related discussion:
- Triple negative invasive lobular breast cancer https://connect.mayoclinic.org/discussion/triple-negative-invasive-lobular-breast-cancer/

Has anyone had mastectomy for ICL and the cancer came back? I had two different opinions from two different oncologists that a mastectomy is required for ICL.

Have just recently been diagnosed with ICL and they have told me I could do a single or double. I really can’t have a lumpectomy due to having 4 lumps in my right breast. I have met with surgeon and will meet with medical oncologist this week to see what he recommends for chemo or other treatment.

@pgiggers
Not an easy choice, but what stage you are at, any genetic factors and that sort of thing play into where to have a mastectomy on one or both. I had DCIS, stage 2-grade 3. Genetics BRCA2 mutation. My tumor also had Her2+ growth and all in all i chose a dbl. I was not interested in watch and wait. BUT, i know get all the facts on your diagnosis and possible prognosis if only one is removed.

@llthomson sorry, do you mean ILC? I had a lumpectomy for my 7mm ILC tumor plus 5 days of radiation & taking half-dose of Tamoxifen. I was 72 when diagnosed. Every situation is unique.

Sorry, yes, I meant ILC for the Lobular Breast Cancer group.

I’m in.

Go to LBCA Lobular Breast Cancer Alliance website. There is a wealth of information and guidance. You are right: Lobular Cancer presents patients with a steep learning curve. LBCA is the place!