Who's her2 and lobular...??

[Andrea Barnett Budin]

You're so right on, Janis! We are all in this together! Here on the board, and in Life.

We are all here on this planet to love, to learn, grow, evolve, give, share... lift one another up and in the process feel elevated!

That's my take. I BELIEVE it with all my heart.

My Inner Voice tells me my biopsy results are good. This is my 2nd biopsy in 2 mnths. It occurred to me that this could be my future. The older we get, we get new (previously unseen) "things" and -- based on my medical history, they have to check it out.

Despite what my Inner Voice says.

Sigh. I'm being a good girl and doing the right thing. So far. But my resistance is rising. I'm alive and well. Move on to someone who actually needs your help please, docs/medical establishment. Thank you very much.

[Lani]

Since I often help people with rare conditions research whatever is known/being worked on, I was approached by someone with PLEIOMORPHIC lobular invasive bc that is....triple negative. That is about 1 in 10,000-1 in 1000,000 bc patients. None so far that are her2+ also.

I think the lobular vs ductal subdivision of bc based on microscopy will be considered outdated in the future as the pathways driving the cancer come to be what is important in determining prognosis and best treatment options.

[Andrea Barnett Budin]

Came upon this old thread, as I was following Lani's pleumorphic comments, searching for information I could wrap my brain around. Thank you Lani! So nice to hear from you. Could you possibly explain the pathway thing?

http://her2support.org/vbulletin/showthread.php?t=43171

In '95 I was 4th stage invasive lobular (2 out of 21 nodes involved) 9 cm tumor. I was ER/PR -- borderline. Previous mammo showed normal. "I" found this huge palm-sized hardness in my left breast. It was never a lump. More a general hardness. Having turned 50 I thought, well my body is changing???? But moved my next mammo up and went to gyn who'd not found anything unusual at last exam. He was in shock when he saw me. How could this have happened???!!!!! He was panting and pacing in circles, obviously very distressed. FYI: I was post-menopausal...

The nurse came to me when he left the room, threw her arms around me, and with a heaving chest said, I WILL SAY A PRAYER FOR YOU..." I knew I was in big trouble...

After mastec, tram flap reconst, chemo I was given Tamoxifen.

Recurred in '98. 4th stage invasive lobular throughout my liver. I asked to be tested for the HER2 gene. Paul and I had been informing ourselves since '95. (Herceptin was still in clinical trials, but...)

My reasoning was if I am HER2 + then they know what's causing my bc and -- as I live in hope -- Herceptin can target that bad gene.

I was HER2+ as of '98 (they didn't check such things in '95). AND I WAS ER-/PR-. I HAD BEEN TOLD ER/PR NEVER CHANGES. WELL... If you read the link above you'll see that Jackie also changed ER/PR. ?????????????? What's up with that?!!!!!!!!

I was told I was 80% HER2 positive in '98, which is the way they categorized us back then.

Docs told me to flush Tamoxifen down the toilet. One mentioned it could have caused my recurrence. Swell!

I think had I had the advantage of Herceptin from the getgo, maybe I wouldn't have recurred!

The FDA fast-tracked Herceptin, slated for more years of clinical trials and dilly dallying -- cause women were dying and being given 3 mnths to live -- and were begging for Herceptin. HERCEPTIN BECAME AVAILABLE TO METASTATIC BC PATIENTS -- SEPTEMBER 28, 1998. 1 mnth after I recurred! Talk about being in the right place at the right time!

So, bottom line, lobular is aggressive, HER2+ is aggressive and
I am sticking with my multiple supplements to help me keep my head above water.

Flori were you lobular (per 2010 post)? Now I'm confused...

Andi

[Lani]

ANDI--what I was saying is that historically, the only ways they had of identifying different types of breast cancer which might perhaps behave differently and might perhaps need different treatment were
1) their appearance under the microscope(ductal, lobular, pleiomorphic)
2) there immunohistochemical stain uptake under the microscope (ER,PR, her2)

now they can determine which pathways are active-- EGFR, her2, PI3K, Wnt, mTor,) etc and try to block the 3 most important escape routes. Still a work in progress... but promising route

[Andrea Barnett Budin]

THANK YOU, LANI for the explanation. I was just telling my husband even the dummied down version was a bit much for my brain to grasp. I so appreciate your input, as always.

I was nodding as I read your post, which means at least a bit of my mind understands. As I continue to process, it should settle in.

Weird being such an oddity... Not that I'm "normal" in so many other ways, I should be used to it. ))