Young ILC under 30 any others out there?

youngdogmum

Hello all,

I am writing from Australia. I have had little success here finding anyone else who was this young at diagnosis currently or previously with ILC.

I am 27, on 13/2 I was diagnosed with classic invasive lobular carcinoma L) breast.

I have no family history. was of previous very good health (still feel healthy!) and moderately fit. Married, no kid yet.

Had L) mastectomy and auxiliary clearance 28/2 - tumour 5cm and 1 x 1mm micromet in 1/14 lymph nodes, stage 2B.

I’ve searched around the Australian forum with no luck, everyone diagnosed over 40. I asked my surgeon and oncologist, both can only recall one other patient they treated under 30 with ILC.

Thought I’d try here - I’m looking for hope. Is there anyone out there beyond 5 year disease free survival who has had ILC in my age range?

I start chemotherapy today actually! Plan is 4 rounds of AC and 4 Taxol with likely radiation after.

Thank you.

Moderators

Hi there, Youngdogmum! We want to welcome you to our community here at BCO. We're so sorry you find yourself here, but we hope you find this to be a place of support.

We have a forum for our members who were diagnosed with breast cancer at a young age that you might find helpful. Lots of members there you can connect with as you begin down this road: https://community.breastcancer.org/forum/27

The Mods

Waronbreastcancer

Hi there, I was 30 when I got my diagnosis of lobular cancer. Soon I will be 34, so almost 5 years out.

Huffpuff

So several doctors I have spoken with think that it might be dated information that ILC occurs primarily to older women. They are seeing more and more women with ILC. Can I ask how you were treated? Are you taking Tamoxifen? Or any other endocrine therapy?

youngdogmum

Hi @huffpuff

As I said in my first post I had a mastectomy and have just finished my AC chemo, will start Taxol in 12 days time for 4 dense doses of that. I am having 5 weeks of radiation after that and will then start my hormone therapy.

My oncologists are leaning towards an aromatase inhibitor instead of Tamoxifen as I am in “induced menopause” with Zoladex. There was a 2017 study that showed slightly be better results using an AI over tamoxifen.

HayleyLorene

hi there,

I’m also from Australia and was diagnosed last year at 34 with ILC and pleomorphic cancer in the left breast.

I can’t seem to find anyone who has a similar pathology which scares me. The tumor was 12cm and in 16/16 nodes with extra capsular extension.

I’ve had a mastectomy. 4 x Ac, 12 x taxol and 5 weeks radio. Also on an aromatase inhibitor and zoladex.

Perhaps this helps you youngsogmum?

And yes the aromatase inhibitors have better evidence than tamoxifen

I’ve been told the recurrence rate is high but would love to hear if anyone else out there has had a similar diagnosis!

tldougan

I am not as young as you but I feel young still at 48! Was always healthy, no family history. Was diagnosed with main cancer (ilc) in right breast and some smaller ones as well in right breast. Currently one more week left of neoadjuvent chemo but unfortunately they don't think it shrunk tumor enough for surgery. So likely I will do hormone therapy for 3 months before surgery.