Diagnosed with ILC - RARE to be Triple Negative?

Krissy37 · December 2017

Hello

I posted on the Triple Negative board and now Trying here. I was diagnosed ILC Triple Negative. 2 cm mass on ultrasound at 1:00 position - higher up towards my muscle/ chest wall. Waiting for CT scan appointment for staging. This is my second time with cancer. I had DCIS about 10 years ago at age 37, Lumpectomy and rads.

I am told mastectomy and 6 months chemo will be my treatment this time as I can't have more radiation.

I've searched the boards and cannot find anyone else with ILC -TN. Anyone else facing or have faced this particular diagnosis? I'm really scared

Icietla · December 2017

Hi Krissy. I am so sorry about your having another bout with breast cancer. Yes, yours is a rare diagnosis. Yes, we have other members with that diagnosis. You are not alone.

https://community.breastcancer.org/forum/5/topics/858187?page=1

https://community.breastcancer.org/forum/71/topics/825314?page=1

More members with your diagnosis are on Agatha's thread linked here. Agatha's diagnosis was changed before she started Chemotherapy.

https://community.breastcancer.org/forum/71/topics/858708?page=1%E2%80%8B

(((Hugs)))

AgathaNYC · December 2017

Hi, Krissy -

I just left a response on your thread in the Triple Negative forum. It is rare, but it happens. Turns out that I have a mix of IDC and ILC.

Hope your treatment goes well!

Ginagia1 · February 2018

I am Triple negative with both ILC and IDC. I have a five percent bit of e+DCIS but am considered TN.

They missed the lobular cancer with every scan, only discovered it at surgery

lightseeker · February 2018

Hi Gina,

I have similar Dx, ILC TN; I'm also Pleomorphic. I was going to mention Agatha but, I see she has a post above yours. I also did ACT but, my Doc also added Carboplatin. I am onto radiation now and then, most likely, Xeloda.

My cancer was never seen in 10 years of mammo/sonos. The Dr who reads the scans believes that it grew between my last mammo and my dx, the following May as opposed to not having been seen on scan. It's aggressive and fast growing. It was very obvious on CT and PET.

You may also want to find out about your Androgen Receptor status; lobular TN tend to be positive. There are trials going on for this now.

xox

Eve

Diagnosed with ILC - RARE to be Triple Negative?

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