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.

jkcares25 | @jkcares25 | Jun 5 5:38am

Do you think it's ncecessary to go back in after lumpectomy to clean up a margin that had pre-cancerous cells if I'm going to do radiation next? I have conflicting opinions for the protocol. Surgeon says radiation will take care of killing these cells, Oncologist wants them removed, then radiation.

jkcares25 | @jkcares25 | Jun 5 5:36am

In reply to @mncmar "Yes, same thing happened to me. First one they found was during my annual mammogram. My..." + (show)

I found the 1st lump myself. Same thing as you where Mammogram and Ultrasound didn't find 2nd. MRI did. Both removed, next up is radiation.

sharonandkathy | @sharonandkathy | Jun 4 3:10pm

Had Lumpectomy on my left breast 2 weeks ago. I had ILC. I'm exhausted and feeling weak I can't seem to get much sleep. When I wake up I can't get back to sleep. Anybody else going through this?

Deb | @tamworth | Jun 4 6:58am

In reply to @marshgirl24 "@tamworth could I ask if this is the same area or on another breast? Thank goodness..." + (show)

It was in the same breast area, and it is also in the other breast now.

mncmar | @mncmar | Jun 2 4:07pm

In reply to @marshgirl24 "I agree @otas. I was diagnosed with ILC last August. I'm coming up to my one..." + (show)

Yes, same thing happened to me. First one they found was during my annual mammogram. My local surgeon didn’t call for a MRI. Mayo requested during my second opinion. They found 2 more cancerous spots. Went from a lumpectomy to a full mastectomy with chemo and radiation. I would insist on a MRI if I were you. Ultrasound and mammogram didn’t pick up either of those.

marshgirl24 | @marshgirl24 | Jun 2 9:29am

In reply to @tamworth "I agree more research has to be done because my mammograms haven't shown anything. I first..." + (show)

@tamworth could I ask if this is the same area or on another breast? Thank goodness that you had the breast MRI.

Deb | @tamworth | Jun 1 4:34pm

In reply to @otas "Hello Tamworth, I was diagnosed with ILC a couple of years ago, I had a lumpectomy,..." + (show)

I agree more research has to be done because my mammograms haven't shown anything. I first had ultrasounds done. That is where the first cancer was found. I had both ultrasound and MRI done last year and they were keeping their eye on an area. This year's MRI confirmed the cancer diagnosis. Needless to say I am a little freaked out now waiting for the surgery.

Deb | @tamworth | Jun 1 4:28pm

In reply to @marshgirl24 "I agree @otas. I was diagnosed with ILC last August. I'm coming up to my one..." + (show)

Thanks marshgirl, I know that for a few years now I have had MRI's done yearly. My mammograms even this month did not show cancer. I guess we have to advocate for ourselves
now and ask to have certain tests done at least for our own sense of well being.

marshgirl24 | @marshgirl24 | Jun 1 10:57am

In reply to @otas "Hello Tamworth, I was diagnosed with ILC a couple of years ago, I had a lumpectomy,..." + (show)

I agree @otas. I was diagnosed with ILC last August. I'm coming up to my one year mammogram but my dr is not considering a breast MRI, which is done as a matter of course at MD Anderson and at Mayo. I'm to have a mammogram and ultrasound. Ultrasound didn't even pick up my architectural distortion. Lobular cells lack the protein that makes ductal cells clump (and be felt) I found myself explaining this to a radiation oncologist last week. I wonder if for years they have approached lobular the same way they treat ductal. If they don't catch lobular early, I imagine you end up with stage 2 or 3. (and I could be wrong about this.) It's frustrating. We can't all go to MD Anderson or Mayo for appropriate treatment. I'm beginning to think that physicians simply don't have time to stay up on this.

otas | @otas | Jun 1 3:56am

Hello Tamworth, I was diagnosed with ILC a couple of years ago, I had a lumpectomy, 5 sessions of radiotherapy & am now on Anastrozole. But to me it has become quite apparent that the approach/treatment to ILC & DLC seems to be the same. It seems there is not enough research done on LBC and therefore the treatment is the same