Who's her2 and lobular...??

[Mel3]

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

[Andrea Barnett Budin]

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...

[newgg]

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

[Andrea Barnett Budin]

this is great to now. encouraging.

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

[CarolineC]

Andi,

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

[Andrea Barnett Budin]

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????

[Vicky]

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~

[suzan w]

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

[Andrea Barnett Budin]

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!!

[Andrea Barnett Budin]

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. ((

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

I have GOOD NEWS, he said. ))

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. ))Thank you for your love and support. It means the world to me! Truly! What would I do without you??!!

Much love,

Andi

[Aussie Girl]

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

[Jean]

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

[Andrea Barnett Budin]

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

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

ANDI

[martie1228]

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!

[Andrea Barnett Budin]

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