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.

Lobular carcinoma stage 2A or stage 4

I had a CT in January 2023 with sclerotic lesions present. Breast biopsy pos for LCIS ER+
Her2 1+ . Lymph node pos for lobular carcinoma. Bone biopsy with rare atypical cells GATA3 and ck7 pos, ER neg. FDG PET negative except for lymph node. FES PET negative except for lymph node. Bone scan determined sclerotic lesions were osteoarthritic changes. Preparing for second bone biopsy. Stage 2 vs Stage 4 makes a big difference but interventional radiologist feels certain the sclerotc lesions are mets, though there are other possibilities. Anyone else?

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@jmh22

Lobular carcinoma stage 2A or stage 4

I had a CT in January 2023 with sclerotic lesions present. Breast biopsy pos for LCIS ER+
Her2 1+ . Lymph node pos for lobular carcinoma. Bone biopsy with rare atypical cells GATA3 and ck7 pos, ER neg. FDG PET negative except for lymph node. FES PET negative except for lymph node. Bone scan determined sclerotic lesions were osteoarthritic changes. Preparing for second bone biopsy. Stage 2 vs Stage 4 makes a big difference but interventional radiologist feels certain the sclerotc lesions are mets, though there are other possibilities. Anyone else?

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Welcome @jmh22. I want to guide you to this discussion where you will meet many others diagnosed with lobular breast cancer:
- Lobular Breast Cancer: Let's share and support each other https://connect.mayoclinic.org/discussion/lobular-breast-cancer/

That must be so disconcerting to not know if the stage of your cancer is stage 2A or stage 4. I'm tagging others like @kiez53 @timely @semurrey @dolphina3 @francinemoran @gbnana @alicejoan @meme5 who can share their experiences with LC and staging.

When will you have the second bone biopsy?

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@colleenyoung

Welcome @jmh22. I want to guide you to this discussion where you will meet many others diagnosed with lobular breast cancer:
- Lobular Breast Cancer: Let's share and support each other https://connect.mayoclinic.org/discussion/lobular-breast-cancer/

That must be so disconcerting to not know if the stage of your cancer is stage 2A or stage 4. I'm tagging others like @kiez53 @timely @semurrey @dolphina3 @francinemoran @gbnana @alicejoan @meme5 who can share their experiences with LC and staging.

When will you have the second bone biopsy?

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Thank you so much. I will check out the discussion.

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@colleenyoung

Welcome @jmh22. I want to guide you to this discussion where you will meet many others diagnosed with lobular breast cancer:
- Lobular Breast Cancer: Let's share and support each other https://connect.mayoclinic.org/discussion/lobular-breast-cancer/

That must be so disconcerting to not know if the stage of your cancer is stage 2A or stage 4. I'm tagging others like @kiez53 @timely @semurrey @dolphina3 @francinemoran @gbnana @alicejoan @meme5 who can share their experiences with LC and staging.

When will you have the second bone biopsy?

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I should get a call Monday from Cleveland Clinic to schedule. After the bone scan last week I got a call from the oncologist all excited that the bone scan was negative and we could move ahead with surgery. Tuesday they had their tumor board meeting and the pathologist is so sure its mets that they want the second biopsy, which I'll do, but though the initial biopsy didn't have enough atypical cells or staining to be diagnostic, I don't know if a negative will be enough. 3 months of this is a lot.

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Hi I am about a yr out after my 1st diagnosis of Lobular Breast cancer. Had 16 rounds of Chemo. Full mastectomy and on my last 2 rounds out of 30 radation. All lymphnodes removed under left arm. One of the drugs my Oncologist want me to go on is Versino .. has anyone e heard anything about this drug or have been on the drug. Do not like what i see on side effects

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@sammy108

Hi I am about a yr out after my 1st diagnosis of Lobular Breast cancer. Had 16 rounds of Chemo. Full mastectomy and on my last 2 rounds out of 30 radation. All lymphnodes removed under left arm. One of the drugs my Oncologist want me to go on is Versino .. has anyone e heard anything about this drug or have been on the drug. Do not like what i see on side effects

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Why did they do 16 rounds of chemo? Which chemo agent(s)? Did you have metastases?

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@sammy108

Hi I am about a yr out after my 1st diagnosis of Lobular Breast cancer. Had 16 rounds of Chemo. Full mastectomy and on my last 2 rounds out of 30 radation. All lymphnodes removed under left arm. One of the drugs my Oncologist want me to go on is Versino .. has anyone e heard anything about this drug or have been on the drug. Do not like what i see on side effects

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To your question, Verzenio is a CDK 4/6 inhibitor approved for ER+ HER2- breast cancer. Mechanism may be different than previous chemo but most work by interrupting cell cycle in rapidly growing cells.

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@jmh22

Why did they do 16 rounds of chemo? Which chemo agent(s)? Did you have metastases?

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The 1st 4 rounds was the chemo called red devil and then there was another type give the same day. The last 12 were taxol. Yes it spread to my lymphnodes 21 out of 27 had cancer cells

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@sammy108

The 1st 4 rounds was the chemo called red devil and then there was another type give the same day. The last 12 were taxol. Yes it spread to my lymphnodes 21 out of 27 had cancer cells

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After surgery, radiation and Chemotherapy, has there been progression of disease?

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@jmh22

After surgery, radiation and Chemotherapy, has there been progression of disease?

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No the last Pet scan was negative of any signs of progression of cancer ..the scan was right be fore I started radiation a t the end of March

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