1. < Breast Cancer

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.

cookie68 | @cookie68 | Nov 19, 2023

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?

REPLY
kks | @kks | Nov 20, 2023

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!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2023
In reply to @ahigge "I would like to ask others about timelines - how long after your diagnosis did you..." + (show)
@ahigge

I would like to ask others about timelines - how long after your diagnosis did you get surgery? My first ILC (10mm) was found 7 weeks ago. They then searched for and found another (6mm). I am not due to have a mastectomy for another three weeks minimum - so ten weeks from it first being identified. Does this seem like a long time? I have been fine about it all, but find the time delay concerning. I may be able to have a full mastectomy without reconstruction next week; I am wondering whether this could be worthwhile, but have not been able to speak with my surgeon. Thank you for your info!

Jump to this post

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?

REPLY
cookie68 | @cookie68 | Nov 21, 2023
In reply to @kks "You are on the right track! ILC is harder to detect and the MRI will give..." + (show)
@kks

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!

Jump to this post

Thank you so much!!

REPLY
deb23 | @deb23 | Jan 8 1:25pm

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.

REPLY
2 replies
cobb | @cobb | Jan 9 9:34am
In reply to @deb23 "ILC stages 1A (R) and 1B (L), dbl mast Jan 2023, 4x chemo, 16x radiation, on..." + (show)
@deb23

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.

Jump to this post

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

REPLY
1 reply
haleyann | @haleyann | Jan 10 1:07pm

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

REPLY
deb23 | @deb23 | Jan 13 2:17pm
In reply to @cobb "Consider joining the 2 evidence based ILC Facebook groups! Everyone is supportive and they have incredible..." + (show)
@cobb

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

Jump to this post

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

REPLY
1 reply
cobb | @cobb | Jan 14 12:26am
In reply to @deb23 "What are the names of these groups so I can find them? Thank you" + (show)
@deb23

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

Jump to this post

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.
REPLY
hollyng | @hollyng | Jan 14 9:30am

I would like to see this too. Great suggestion.

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