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

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

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

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.

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

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?

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?

Thanks to all of you for asking and answering questions. Together with our pooled knowledge and direct experience plus emotions we create a more detailed account of this whole cancer experience than any one (or 3!) doctors can do. 💕

1) Ask for gene blood test.

2) What are options? Lumpectomy or mastectomy with implants or not. Need to ask questions about all the steps and options and research it yourself too. Also, what is the time frame for implants? If implants, can plastic surgeon do that after surgery or do you need to wait until after radiation.
***Lumpectomy needs radiation afterwards.
3) Contact breast cancer support groups now and work with them before your surgery. Find out and practice anti-stress methods. That is extremely important.

4) What anti-estrogen meds will you take? Any chemotherapy?

5) When can surgery be scheduled and how long at hospital?

Just diagnosed with LCIS and meeting with a breast cancer doctor tomorrow. I'm so unsure of what the next steps to take should be. I have a strong family history of breast cancer. I also have a 6 year old and a 9 month old baby. I'm only 36 years old and newly married also.

I had Triple Negative so can't speak about after cancer drugs because it's not hormone related. I would check with your oncogist to see what they have planned for you., I go every 6 months to see oncologist and get a diagnostic mammo one year and MRI the next year. I only get a blood test every 6 months because they give me a biophosphate infusion every 6 months. I am post menopausal, 69 yrs old , they say it may also help with reocurrence since my type of cancer has s high reocurrence rate. I hope you find the answers you need and good luck. I also have very dense breasts which is why MRI. Ask if a diagnostic mammo will show lobular cancer with your breasts.