Who's her2 and lobular...??
 

I have been told over and over by oncs and radiologists and chemo nurses that it is very very rare for someone to be both.

They kind of gasp.

Then they ask me what yr I was dx, I say 1995 and they gasp again.

I add that I recurred in '98 throughout my liver. The same bc???!!!, they ask. Yes. Wow! AND LOOK AT YOU NOW!

So I'm just wondering -- I am pretty sure there are more of you who are both lobular (rare I know) AND HER2+...

Please sign in. It's nice to be unique but this is so weird, and the reaction never fails to shock. How about you???

ANDI

Re: Who's her2 and lobular...??
 

NOT me, but I just wanted to say hi to you!
(And I keep thinking of the Farmer in the dell lyrics, "the cheese stands alone", so didn't want you to be the cheese - unless we're back on the cheese whiz thread).

Re: Who's her2 and lobular...??
 

Glad to see your sense of humor, Flori! I am not Lobular either, and know only one or two who "were".

Just keep standing, Andi, whether alone or in dozens.

Re: Who's her2 and lobular...??
 

Hey Pals!
Not lobular... but I love Cheez Whiz!
Love to all of you!
Denise

Re: Who's her2 and lobular...??
 

Hi, I haven't got my profile up yet . But I am Her@+++ and had invasive lobular and invasive ductal ca ! didn't know it was rare !

Re: Who's her2 and lobular...??
 

I'm her2 and lobular too.

Kind thoughts to all
Nancy

Re: Who's her2 and lobular...??
 

I'm Her2 and invasive lobular...and lcis (lobular carcinoma in situ) and ER +. Everywhere I go...doctors say '' No Way'' and I say, ''WAY!!''

Re: Who's her2 and lobular...??
 

Thanks for the giggles and love -- Flori, Steph, Denise!!

Oh right I am invasive lobular (2 out of 21 lymph nodes)...

Hils you are lobular and ductal and HER2 -- YOU WIN! Wishing you all the best! You are obviously most special...

Nancy thanks for chiming in. The radiologist the other day kind of freaked me out. So many gasps. And then she seemed to find herself elated (after asking the 3rd time -- what year???) that I was alive! I AM ALSO ELATED! GRATEFUL FOR EACH DAY. ONE DAY AT A TIME...

Waiting for yet another biopsy. Needle biopsy of my only remaining breast. Should know today, or tomorrow... I BELIEVE I DO NOT HAVE CANCER. Waiting for confirmation is all...

Never had a needle biopsy. Not terrible. Could go forever without ever having to do it again however... Just saying...

Re: Who's her2 and lobular...??
 

Yes Susan -- WAY! AND -- 4TH STAGE!!! THAT REALLY BLOWS THEM AWAY... They seem not to be able to grasp that I am still here. YOU NEVER HEAR THAT, they say. Don't know whether to smile or cry. But always choose to SMILE! (Then look up and say THANK YOU...)

Re: Who's her2 and lobular...??
 

Andi,
Not lobular, just wanted to say"hi" and thinking of you. Sending good biopsy results your way. You inspire me!

Pat

Re: Who's her2 and lobular...??
 

Hi Pat!

It inspires me to know I inspire you... :o))

Waiting since last Thursday. So been busying myself to keep my mind occupied. We all hate waiting... Immediate gratification is so much appreciated!

Thanks for the hi.

LOVE,
ANDI

Re: Who's her2 and lobular...??
 

Hi Andi,

Not lobular either but chiming in for good biopsy results, too.

I remember when you stopped Vitamin H - in my "lurker" days before my 2nd round of BC. Love your attitude and your willingness to share. We are all in this together.

Janis

Re: Who's her2 and lobular...??
 

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.

Re: Who's her2 and lobular...??
 

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.

Re: Who's her2 and lobular...??
 

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

Re: Who's her2 and lobular...??
 

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

Re: Who's her2 and lobular...??
 

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. :o))

Re: Who's her2 and lobular...??
 

Andi , I had LCIS ( nuclear grade 3 pleomorphic? ) as well as DCIS and 1.5 IDC w/ lymphovascular invasion..,honestly, I never paid much attention to anything but the invasive portion and positive node.
Hugs!
M

Re: Who's her2 and lobular...??
 

It's kind of like the invasion of the body snatchers. No one wants an invasion!

What year was that M??

Look at you! Here on HER2. You're everywhere!! :o))

Re: Who's her2 and lobular...??
 

Haha!! My diagnosis was in 2004/05 (biopsy 04, masts full staging 05)

"Takes a lickin'..."

biopsy results?????
Holding my breath..

Re: Who's her2 and lobular...??
 

I was both lobular and ductal, IIIc in 2010. I've never had a doctor comment on it either way.

Re: Who's her2 and lobular...??
 

Oncs and radiologist, even chemo nurses are shocked! Open eyes, open mouth expressing silent WOW, followed by gasp...

And you, you have all bases covered. You are really special Mel! You're a full opportunity hostess... And doing fine.

What's up, Ladies, with the change in ER/PR -- since they say you are what you are forever, it never changes??? Guess they have to go back and rethink that one...

Re: Who's her2 and lobular...??
 

Diag. 2004 Her2 pos ( triple pos. ) and lobular doing great !! Also did not know that it was rare...just makes us more special !

Re: Who's her2 and lobular...??
 

this is great to now. encouraging.

i am still waiting for my biopsy results from last thurs. Geez...

Re: Who's her2 and lobular...??
 

Andi,

Did I miss something? You're waiting for the biopsy result from what?

Re: Who's her2 and lobular...??
 

Hi Caroline,

So weird. I went for mammo last Tues (20th). mammo good.

i also get sono cause lobular hides and i am hyper vigilant.

had ct scans (chest/abdom/pelv) in June. chest was stable. abdom another story. surg for mesentery mass mess and -- benign.

in sono for breast, the only remaining breast, what was a dot last yr, is now a bit larger. a change. given my medical history..... blah, blah...

needle biopsy last thurs, they squeezed me in. never had that. don't wish to have another. ever. but not that bad. meh...

biopsy should be back monday, yesterday, or tuesday. i have not been called.

i am waiting. i got through weekend. i even got through yesterday. woke up this morning and can think of nothing else.

have made 3 calls. left messages. last message i left explained that i had reached the point of feeling alarmed. please call me back.

last message i left was @ 230.

i am officially puzzled and worried.

will let y'all know when i know, which better be soon, before i have a nervous breakdown...

i keep going back to '98, and '95 and cannot imagine returning to all that again.

appreciate everyone's concern. i feel supported... my sister, my husband, my dghtr have tried to be patient, but are now anxious... what in the world????

Re: Who's her2 and lobular...??
 

Oh Andi- that is weird! Prayerfully hoping you'll hear soon and that all shall be well. I'm just going to send love and light your way and hope that you'll hear soon. Love to you~

Re: Who's her2 and lobular...??
 

Sure do hope you have heard something by now. Waiting is worse than knowing

Re: Who's her2 and lobular...??
 

Yes, Susan. Waiting is way worse than knowing.

I am choosing to KNOW I am okay, because the other choice is journeying down the path that returns me to Vit H, surgery and worse...

Just tell me!!

Re: Who's her2 and lobular...??
 

B 9 ... !

BENIGN!!!!!!!!!! Biopsy is benign! :)


I found out at 6:30 this evening, after emailing my onc, whose office seems to have failed to collect messages left throughout the day. :o((

Onc called me home, on my cell, on Paul's cell and emailed me!!!!

I have GOOD NEWS, he said. :o))

This time I really was so shaken! Not hearing Monday (as hoped) or alllll day Tuesday (which was assured) and not getting call backs, as usual, left me feeling -- it can only mean ..... (well you know how that dialogue goes...)

So I can breathe again. :o))Thank you for your love and support. It means the world to me! Truly! What would I do without you??!!

Much love,

Andi

Re: Who's her2 and lobular...??
 

Dear Andi,

I'm an Australian pathologist who managed to grow her own HER2+ cancer, although not lobular carcinoma.

I don't think I have ever seen a HER2+ lobular carcinoma, but I have seen one reference indicating that it occurs at a rate of roughly 5% of HER2 cancers. That makes your cancer maybe 1 in a 100.

I don't know what pathological criteria were used for determining the cancer subtypes in order to get the 5% figure.

When your carcinoma was detected in 1995, determination of the type of cancer was based only on what it looked like under the microscope on routine stains. There is, it has been discovered, an overlap between what a lobular and a duct carcinoma look like - one can mimic the other and vice versa. Some cancers can have both lobular and ductal components in the one lesion.

Subsequently a new test to check if a cancer is lobular or ductal was introduced. It is called an E-cadherin stain which is performed on fresh cut slides of the original tumor. It would be very interesting for your doctors to check if your original tumor was E-cadherin negative, as would be expected for a lobular carcinoma. A ductal carcinoma would show positive membrane staining.

Also in some cases, HER2 positivity is "heterogeneous" which means "mixed". This means part of the tumor shows amplification and part is negative. Usually in a mixed lobular and ductal carcinoma it would be the ductal carcinoma which was HER2 positive.

I would expect there would be no difference is therapy whatever carcinoma subtype you had. It's the ER and HER2 status, tumor size, grade and extent of spread which are important.

Cheers and glad your recent biopsy turned out to be OK.
Aussie Girl

Re: Who's her2 and lobular...??
 

Andi, just reading this....glad to read the happy ending!
Sending you a huge hug.
jean

Re: Who's her2 and lobular...??
 

Thanks for the input, Aussie. Still processing what you wrote, but glad to have it!

Hey, Jean! Hugs right back to you...

ANDI

Re: Who's her2 and lobular...??
 

New here. Will have round 3 of DD AC next week. Start Taxol/Herceptin in October. Glad to have found this!!! Am lobular, triple-positive, and pleomorphic. Stage IIIa. Tumor 7 cm (my family practitioner took my complaints of nipple changes seriously after GYN didn't at annual exam several months earlier), no nodes as they had been removed with previous BC (tubular and DCIS) 16 years earlier. BMX with positive posterior margin. Can't have radiation since I already had it. Am greatly encouraged reading through this thread!!! I guess it's just now starting to settle in as to how much of a fight this really is! I know, I'm a little slow at times! ;)

Re: Who's her2 and lobular...??
 

Hi Martie!

You went 16 yrs NED... Amazing.

And now, you have this odd signature bc thanks to your family practitioner! Geez. So often hear how one doc dismisses our concerns. We know more about our body than they learned throughout their medical training and practice. Our body's talk to us!

And we can talk to them. Give them directions. Keep telling your body HEALTHY AND WELL. NO MORE CANCER! It'll get it's act together.

So sorry you're going through this, but you seem like one who will prevail!

Many wise Sisters on this board, full of compassion and experience. You have found a great ally, Martie!

Keep listening to your Inner Voice (vs the voice in your head). It is your Spirit talking to you. It is a great sage.

When you KNOW a thing, it will come to be. So, may you KNOW that you will survive and thrive!

Love and Light,
ANDI