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.

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!

katgob | @katgob | Mar 24 11:08am

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

@vissdoc
At the top of the page where it says search.

dolphina3 | @dolphina3 | Mar 24 10:18am

In reply to @vissdoc "@dolphina3 Congratulations and continued wishes for good health! I had the same treatment chemo, right mastectomy,..." + (show)

@vissdoc

God Bless to you as well. They have amazing drugs now for cancer .
Sending a hug and hope you continue to feel good.

vissdoc | @vissdoc | Mar 24 8:48am

In reply to @katgob "Did both of you put these two diagnoses in the subject line above? The first one..." + (show)

@katgob
Thank you for your suggestion.
How do I put "Advanced stage Lobular TNBC" in subject line?

vissdoc | @vissdoc | Mar 24 8:46am

It was recommended I post "Lobular TNBC - advanced stage" on subject line to reach out. How do I do that?

vissdoc | @vissdoc | Mar 24 8:43am

In reply to @dolphina3 "@vissdoc Hi, I had lobular TNBC cancer stage 2B I had chemo, masectomy, radiation, xeloda and..." + (show)

@dolphina3
Congratulations and continued wishes for good health!
I had the same treatment chemo, right mastectomy, radiation. Diep flap reconstruction which went well. My cancer was originally ER+ but mutated to TNBC. I was on all estrogen blockers ( anastrozole, Letrozole, Tamoxifen and Raloxifene ) but stopped the first 3 due to intolerance. During routine check up after reconstructive fat grafting I was found to have new lymph nodes on the contralateral side. Biopsies and further imaging revealed stage 4 disease to lung ( pleural effusion) and liver nodes. I am taking a study drug which is an androgen blocker as my tumor has always been AR +. The hypothesis is that if estrogen blockers helped ER+ cancers and maybe even reduced the ER pleomorphic parts of my tumor, perhaps Androgen blockage may have similar effects? I still feel absolutely fine and symptomless and I pray and do all sorts of alternative things too.
Thank you for your response and God bless !

gailmarienewton | @gailmarienewton | Mar 24 8:33am

I am hurting. Now with infection in left no-breast taking antibiotic. Right breast seems as though we are healing. Radiation starts Thursday....PET today to see if we have any in the brain....when does the pain end?

dolphina3 | @dolphina3 | Mar 24 4:40am

In reply to @vissdoc "Can we take it further? I have stage 4 lobular cancer which changed from ER+ to..." + (show)

@vissdoc

Hi,
I had lobular TNBC cancer stage 2B
I had chemo, masectomy, radiation, xeloda and zomeda for my treatment. I am almost to the five year mark.
I was 67 at the time and I live in Canada so that was the protocol at that time
Thinking of you and sending a big hug.