Lobular Breast Cancer: Let's share and support each other
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.
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.
Hi- I've been on Letrozole for 2 months and biggest complaint is fatigue and brain fog but who knows if that comes with the territory (57yrs) - I was hoping to get some feedback on treatment follow up for Lobular as I just read on the ASCO site that imaging and surveillance post treatment is still so varied and that 6 months is good time to have mammo or MRI particularly for Lobular. I don't see my onco for an entire year from diagnosis for a diagnostic mammo but meet with her NP 4 months after being on Letrozole. I haven't had any blood work through all of this and starting to think I should check in with my onco at Dana Farber. Any thoughts?
Maybe Letrozole causing this anxiety - I'm trying not to focus on it but maybe just need comfort that follow up is correct.
Hope you are doing well. I get an MRI every other year and a diagnostic mammogram, we don't have 3D yet. I asked my surgeon because of my dense breasts . Harder to see with dense breasts. I have alot of benign lumps in other breast and never have problem with having the MRI and haven't had to have extra tests because of. Good luck with everything.
Hi:
I am switching to another site which will do 3D mammograms and ultrasound twice a year as opposed to the other company site which is mammograms only once a year.
Then there is the issue that MRI’s show lobular cancer better. Would most likely have to request MRI from Oncologist. He said that most women do not want this. (MRI.)
Ihwoz @!Ihwoz
Try melatonin instead.