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.

joriegrace | @joriegrace | Feb 2 4:07pm

I would love that! Just diagnosed with it

char04 | @char04 | Feb 2 6:09pm

In reply to @kandisn "I have recently been diagnosed with stage 1 lobular cancer. I had an MRI that showed..." + (show)

Hello Everyone! My name is Charlene and I’m 57 years old. In Dec of 2024, I was shocked to learn that I needed more imaging & an ultrasound of my left breast. In the 16th, I had the biopsy and 3 days later was told I had ILC. Sorry to say, I hadn’t heard of this before. I was in shock. After the appts and procedures, I had surgery on Jan. 28th, just 5 days ago. I’m grateful and thankful for a platform such as this. God bless each and every one of you, brave hearts. 💕

katgob | @katgob | Feb 2 9:25pm

Welcome char04

Make sure you enter ILC up in the search bar. There are many discussions. This is a great place to find a community of people who know what you are walking through.

mawmaws | @mawmaws | Feb 3 10:11am

In reply to @nanny23 "I had lobular breast cancer in my right breast. It was aggressive. Then they found cancer..." + (show)

I only had lumpectomy surgery to remove two tumors in left breast & removal of 7 lymph nodes under left arm December 2021. I have Mammary invasive carcinoma with lobular features. For the last year and a half they have been following two small masses right breast and two in the left breast & tiny one under my left arm. I wish I had double mastectomy now I think I should I’m scared I have other health issue that risky for me to take any medication. I read you could have a Simple mastectomy leaves the second skin takes out all the Breast issue I have implants put in reconstructed years ago and I wish never done it that need removal too.I think the cutting through the muscle causes most pain. I think implants behind muscle I hope not

Colleen Young, Connect Director | @colleenyoung | Feb 5 8:21pm

In reply to @ldennis23 "I am good but struggling with man medications." + (show)

Hi @ldennis23, I'm sorry to hear that you are struggling with side effects of medication for ILC. What symptoms do you deal with?

Colleen Young, Connect Director | @colleenyoung | Feb 8 8:32pm

In reply to @annah84 "Hi all, I was diagnosed with ILC in 2024 on my left breast.I has left mastectonomy..." + (show)

Hi @annah84, how are you doing on tamoxifen? Did your team discuss fertility with you before treatment?

Colleen Young, Connect Director | @colleenyoung | Feb 12 6:06pm

In reply to @enriqueymyriam "Hi I too have ILC 1/2 , had a double mastectomy on November 2024. When was..." + (show)

@enriqueymyriam, I see you have early stage ILC and it sounds like it is a recent diagnosis. It is only natural to worry about recurrence. As they say, leave tomorrow's worries for tomorrow.

How was your recovery from surgery? Do you have to have any further treatments at the moment?

Colleen Young, Connect Director | @colleenyoung | Feb 13 8:18pm

In reply to @char04 "Hello Everyone! My name is Charlene and I’m 57 years old. In Dec of 2024, I..." + (show)

Welcome @joriegrace and @char04.

@char04, how is recovery from surgery going? Will you have further treatments?

@joriegrace, do you have a treatment plan? How are you doing?

joriegrace | @joriegrace | Feb 14 11:00am

In reply to @colleenyoung "Welcome @joriegrace and @char04. @char04, how is recovery from surgery going? Will you have further treatments?..." + (show)

Hi, yes I am doing double mastectomy on Feb 18
No reconstruction I am too old to go through that. Hopefully the Oxoco test comes back good. Then no chemotherapy just stay on Letrozole. How was surgery Char?

enriqueymyriam | @enriqueymyriam | Feb 15 6:38pm

In reply to @colleenyoung "@enriqueymyriam, I see you have early stage ILC and it sounds like it is a recent..." + (show)

Yes , early stage but multifocal and PNI positive.
Recovery from surgery went well.
Oncotype with a score of 16 no chemo nor radiation.
On Tamoxifen since August 2024.
Yes , I know leave worries for tomorrow but it's not that easy.

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