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

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

katgob | @katgob | 10 hours ago

In reply to @pgiggers "Have just recently been diagnosed with ICL and they have told me I could do a..." + (show)

@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.

pgiggers | @pgiggers | 12 hours ago

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.

llthomson | @llthomson | 13 hours ago

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.

Colleen Young, Connect Director | @colleenyoung | Mar 25 3:32pm

In reply to @vissdoc "@katgob Thank you for your suggestion. How do I put "Advanced stage Lobular TNBC" in subject..." + (show)

@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/

vissdoc | @vissdoc | Mar 25 7:51am

In reply to @lls8000 "Hi @vissdoc, You may find this discussion helpful. It's not specific to Lobular, but there are..." + (show)

@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 | @vissdoc | Mar 25 7:45am

In reply to @gailmarienewton "I am hurting. Now with infection in left no-breast taking antibiotic. Right breast seems as though..." + (show)

@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.

gailmarienewton | @gailmarienewton | Mar 25 5:33am

Just…. Still hurting….

Lisa, Volunteer Mentor | @lls8000 | Mar 24 1:06pm

In reply to @vissdoc "@katgob Thank you for your suggestion. How do I put "Advanced stage Lobular TNBC" in subject..." + (show)

Hi @vissdoc, You may find this discussion helpful. It's not specific to Lobular, but there are comments from others like @olivia7850, a "Stage 4 pleomorphic invasive lobular carcinoma, triple negative" patient included in this discussion thread.
https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-treatment-options-1/
I am early stage Lobular (2024), but stage IV Lung cancer (2020). Sending you big hugs, I know this isn't an easy diagnosis to process.

jmab | @jmab | Mar 24 11:23am

I am 72 & was diagnosed last August with stage 1 ILC, found on mammogram (no lump). Had a clear lumpectomy & 5-day radiation. Started on Jan. 1st taking a half-dose (10 mg) of Tamoxifen & I'm doing ok! Doing Pilates 4 days/week & was already vegan, but working to lose a few more pounds (takes so much longer at my age!). Stopped all alcohol. Hoping to stay healthy & cancer-free from now on!