STAGE 1, GRADE 3, ER-, PR-, HER2+

Hi!! I am doing ok. Thanks! The first chemo was tough. The doctor said that should be the worst one since we know what to expect now. We will not do neulasta again. The bone pain was horrible. We will do neupagen. He also gave me prevacid and axid to help with the stomach pain. I came back to myself after about ten days. Thank God! The body bounces back. One down, five to go. You all inspire me. Thanks!

2 down, 4 to go! I can't wait til spring!

Thanks. I have 3 down now. It goes slow. The side effects are tough. I am inspired by all of you who have finished. You make me believe I can get there.

You most definitely can get there! It's a well known fact that Mary Ellen's are persistent!

Oh, MaryEllen, here's a cyberhug. I have to admit, sharing others' journeys is difficult, but I know in the end that people will be there for me, too, if and when I have to go through this.

Take good care of yourself in the meantime. Pamper you in the ways you know best how ! You deserve it!

Thanks, Mary Ellen, but my oncologist said that the ER+ was VERY VERY weak. At first I thought what you were saying was accurate.

But apparently it's so weak as to be almost not an ER+ qualifier, whatever that means.

For all who are getting chemo I have been there when I was diagnosed the first time and my hats are off to you.  I am sure I will have to do it again, but it is very brave of you, knowing the side effects of it.  Hang in there...

Sandy

Hi Char, I think I might have the same (or similar) report as you.  I'm Grade 1 and Stage 1 Per+ and ER+...but right now my Her2 is "equivacle" (or some such word). I am now having the FISH test to confirm if my Her2 is positive or not.

I met with the oncologist on Feb 3 and the Her2 test was not yet back (surgery was on January 8th) and he thought for sure it would probably be negative as my other numbers were "so good".  He may be wrong about that.

I am wondering if you (or anyone else out there) knows:

a) how often an "equivacle" result turns into a positive result

b) how long does the FISH test normally take?

c) if an "equivacle" result is enough to recommend or warrant chemo?

Thanks my pink sisters!!

Hi Linda-

When I first got my diagnosis, my her2 status came back equivocal, too. They sent it out for a FISH test and I think that took about a week. Mine came back negative-so I am ER+PR- (well the oncotype test came back and said I was PR+ but my oncologist wasn't so concerned about that or the discrepancy) and her2-.  Based on different criteria and my oncotype score, I opted not to do chemo, even though my oncologist wanted me to because of my age at diagnosis (41).

Good luck to you. Oh, and I'm stage 2a, no node involvement.

Hi- with my original biopsy the result came back ER+/PR- and inconclusive (or whatever the correct term is) on HER2 status. They sent it out for the FISH test and it came back negative for HER2.

I couldn't decide on chemo from looking at adjuvent online and going over a few other things, so I got my oncotype scoring done. It came back in the grey area with this, too. But on the oncotype testing-which is a gene test-my results came back ER+ PR+ and HER2-. It was barely PR+ (with the margin of error and that it was 2 different types of tests done-I guess this is where the discrepancy comes in) and I guess most of the treatment focuses on estrogen and not really progesterone, although there are studies being done on that now, too. So I am Her2 neg. Chemo was recommended because I was only 41 when diagnosed and he wanted to be as aggressive as possible because I was so young and my tumor was fairly large (over 2cm) and could handle the side effects. However, the stats didn't sway me and since I was node negative and had no vascular involvement and clear margins from my lumpectomy.

I did do 33 rounds of rads and am currently on Tamoxifen. The oncotype score gives me a 12-19% chance of distant recurrance-chemo only POSSIBLY  could've knocked that down by 1-2%-but could've done more damage as well. It's a very personal decision for anybody. I struggled, but finally, with my oncologist's consent decided against it. I am at peace with that decision (most days, lol)

Good luck to you-

Deborah (Whitby jet is my dog. I always forget to sign my name)

HI Linda - I googled e-cadherin and found this scary information:

http://breast-cancer-research.com/content/5/6/R217

First time I ever heard about this - I don't recall seeing mention of it in my pathology reports, nor in my Ocotype DX - but these were done two years ago. I hope someone with more information will come along SOON Linda!

Hi pink sisters!  I'm happy to report that the oncolgist called and my FISH score was 1.4 which puts me in the negative category.  I'm thankful for this and mindful of others who face chemo due to having a positive reading....my hugs to you all.

I've found out more about e-cadherin...and it is useful to have this information when you have lobular cancer as lobular will always have a negative e-cadherin...not a positive.  My pathology report for the original biopsy said that some of the cancer mimicked a lobular cancer but then said in brackets right after (but strongly e-cadherin positive).  This would mean that even though it looked like lobular, it wasn't.  In fact, when the tumor was removed and studied, none of it was lobular.  85% was IDC and the rest was DCIS.  Apparently there are quite a few studies going on with respect to e-cadherin and what effect this protein might have in future cancers forming in other areas in the body. 

Hi Shadow...contratulations...you are half way there! 

What a beautiful little girl you have...an absolute vision of a sweet angel isn't she?

Taking time here just to say that even though your mom isn't physically here...there are a lot of your pink sisters (such as myself) who are old enough to be your mom...and are here for you.  Keep up the good fight...you are doing well.

Hi Char,

Thank you for getting back to me.  I know you are a wealth of information as I've followed many of your posts...LOL.

I have found out that I am Her-2 negative and am not therefore required to take chemo.  I don't know why but I feel a little upset as I really want to throw everything I can at this cancer.  Initially I was afraid of chemo and then I got my head into it when I was equivocal for Her2. 

Here in Canada they do not do the ONC test.  I'm going to pay the money and have it done anyway.  Yes, it's expensive but it's worth it to me to have peace of mind.  If I have a high number...I am going to talk to my oncologist about chemo.  Right now I am on tamoxifen and will be starting my radiation in 10 days or so.  He is not yet aware that I am going to ask for the ONC test to be done.  I am not sure why I want to know my score so much...but I really do.  So, it's worth it I guess.

If you were me...would you have the ONC test given my diagnosis?

Hi MaryEllen...thanks so much.  Now I'm starting to think I won't bother with the ONC testing.  At some point I just have to let go and stop worrying so much about dying and start thinking about how I'm going to live my life and move forward.

By the way...what is the weather like in New York these days?  We've been having the warmest winter ever...no snow...hardly any rain and already cherry blossoms are on the trees!  People are actually thinking about cutting their grass already and we're still in February.  Amazing.