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.

Profile picture for vissdoc @vissdoc

Can we take it further? I have stage 4 lobular cancer which changed from ER+ to TNBC. Can't seem to find many others on this journey

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@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.

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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?

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Profile picture for dolphina3 @dolphina3

@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.

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@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 !

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

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Profile picture for katgob @katgob

Did both of you put these two diagnoses in the subject line above? The first one i have not heard of the 2nd i did.

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

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Profile picture for vissdoc @vissdoc

@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 !

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@vissdoc

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

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Profile picture for vissdoc @vissdoc

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

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

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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!

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Profile picture for vissdoc @vissdoc

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

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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.

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Just…. Still hurting….

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