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

Hello,
I was diagnosed with ILC on Nov 3rd. Met with a team of doctors on Nov 15th. They are sending me to do an breast MRI because of how dense my breast are. They said that one good thing is that at least this a slow growing cancer, I don’t know how that is good, it’s still growing.
I’m trying to get a second opinion from Dana Farber in Boston.
Does anyone have any advice?

You are on the right track! ILC is harder to detect and the MRI will give a clearer picture. The size and number of tumors will help determine your next steps. Pray that it is just one and small!

Hi @ahigge, you may also be interested in this related discussion:
- Wait time from diagnosis to surgery
https://connect.mayoclinic.org/discussion/wait-time-from-diagnosis-to-surgery/

How are you doing?

Thank you so much!!

ILC stages 1A (R) and 1B (L), dbl mast Jan 2023, 4x chemo, 16x radiation, on anastrozole since July 2023 with minor aches and hot flashes, improves significantly with exercise.

I am now in the monitoring phase, with CT of chest, abdomen, pelvis, and bone scan every 3 mos. Last one in Nov appeared clear. However, I cannot shake this feeling that ILC needs to be watched and searched for much more diligently than IDC. Does anyone else feel this way? My last CT did not show any mets, but is the radiologist experienced or trained on what unusual things and in what unusual locations to look for because this is ILC??? I see on various boards that other patients have PET scans. I requested one and was told it is not done at my stage, only if there are symptoms and suspected mets. But why not look now, look early? Once I have symptoms, it has most likely metastasized, so am I suddenly stage 4 at that point? And wouldn't it be better to find it and treat it much earlier than only when symptoms appear??? I do not agree with or understand this "medical protocol". Has anyone else tried to be more proactive only to be told no? SO frustrating!! My onc wants to extend my CT schedule to every 6 mos, though he said he will stick to every 3 mos if it helps me sleep at night. But if CT is not the best type of imaging to SEE ILC, what does 3 or 6 mos matter??? I feel that we would need an expert radiologist who knows exactly what details to look for, and how do I find out if my local radiologists do? I ask and ask questions and am probably becoming a pain in my onc's neck, but I can't let it go until I feel they have done all that is available at this time, to thoroughly evaluate me. This "wait and see" attitude makes no sense to me. I feel like if we SEE something by WAITING, it's already too late.

Thoughts? Experiences?
Thank you.

Consider joining the 2 evidence based ILC Facebook groups! Everyone is supportive and they have incredible amounts of information.

Does someone have the websites for ILC Facebook groups? Considering a second opinion for myself at MD Anderson.

What are the names of these groups so I can find them?
Thank you

Hi Deb,
1. Lobular breast cancer(ILC) invasive lobular carcinoma (science & support).
2. ILC Sisters: lobular breast cancer support & evidence-based information.

Hope this helps.

I would like to see this too. Great suggestion.