Invasive lobular

suzan w · 01-15-2008, 07:50 AM

Just curious...how many of us here were originally diagnosed with invasive lobular carcinoma? It is usually not Her2+. Just read the "News" thread about the use of hormone replacement therapy and increased risk of lobular carcinomas. That was the case for me. I had my pathology repeated twice, they thought that the Her2+++ was a mistake the first time.

newgg · 01-15-2008, 08:35 AM

Hi Susan,

Same here. With hormone replacement for 5 years...stopped them about 3 to 4 years before the dx May 2004 with invasive lobular,node positive and HER2 at a big 3 plus. DANG !! Fluid cyst was seen but not the sneaky lobular on the mammy. Did more test and the lobular was seen on the ultra sound.

Bonnie

nancy dip · 01-15-2008, 12:07 PM

Iwas diagnosed with invasive lobular. I never used hormone replacement. I am ER+. Nancy

Andrea Barnett Budin · 01-15-2008, 02:27 PM

I WAS DX W/INVASIVE LOBULAR + 2 out of 21 nodes in '95. No one was checked for HER2 at time in the world.

I was put on Tamoxifen, hoping I would derive some benefit as ER/PR *borderline*. When I recurred in '98 they told me to flush the Tamoxifen. One onc said it could have even caused my metastasis. New '98 pathology: Invasive lobular carcinoma throughout my liver AND HER2+ 80%!! It also showed I had become ER/PR negative!

Each time I go to my onc he says, You know it is highly unusual to be dx w/invasive lobular AND be HER2+. I alw say, I know. You told me...

He says, both are highly aggressive. I say, I know. Yet -- here I am!

Also -- prior to orig dx in '95 I was on HRT for a few mnths. Had uncontrollable bleeding and was given huge dosages of progesterone for 10 to stop this. It did not work. Then given 2 3-mnth Depos Provera (?sp) injections. That makes me wonder a lot as well.

Susan, what article are you referring to? Would love to know more about this... Thanks for starting this thread!
Andi

suzan w · 01-15-2008, 02:38 PM

Hi Andi! I found the article here on the Her2 site...On the Her2Support Group Forums page, it is the last category. NEWS and the article is Short term hormone use...
This proves to me that I should always listen to that "little voice" in my head that tells me what to do!!! I always doubted HRT and never wanted to take it...

Andrea Barnett Budin · 01-15-2008, 02:50 PM

HERE'S MY STORY. I too would like to share. Please check out my signature.

Andi

Andrea Barnett Budin · 01-15-2008, 03:25 PM

Hi Susan! I am in complete agreement w/your reasoning. I would never have gone on HRT except for my daily suffering from hot flashing non-stop. I was desperate. And I was only on for a few months and then had to stop b/c of bleeding that couldn't be controlled. 2 yrs later, I tried again, knowing that the only relief I ever got (throughout my 10 yrs of feeling on fire and dripping wet) was during the brief period I was on the HRT. Again, bleeding issues. All attempts to stop that (w/large dosages of progesterone) failed. So I discontinued its use.

I had just had a clear mammog. 4 mnths later I noticed this spongey, denseness of my entire left breast. I never had a lump. I assumed it was due to turning 50. Being post menopausal. Never thought it was cancer, b/c I had no lump, no oozing nipple. I alw did first of the mnth self exams. I thought I was looking for a marble, or a pea. Even an egg. Not a general hardness of the entire breast!

I knew I needed to bring this to my GYN's attention. I moved my next mammog up sev mnths. I thought perhaps I had a cyst. I might require surgery. Never thought it was consistent w/bc.

I am curious how your lobular bc presented, Susan. I would also ask others for their input re this question.

I have since made it clear, to my two daughters, and to every one of my girlfriends, that -- IT ISN'T ALWAYS A LUMP that you are looking for.

Lobular *hides*. It is a radiologist's worst nightmare. They look and look and they see nothing. THEN, when they can see it -- it is huge. Advanced. And super serious!
Andi