Newly Diagnosed ER-, PR-, HER+

suemed8749

Newly Diagnosed ER-, PR-, HER+

suemed8749

I thought things were going reasonably well with my 1-16 diagnosis of IDC. I had lumpectomy (2.2 cm) and snb on Feb. 4 (clean lymph nodes), then the surgeon did a re-excision on Feb. 13 to get clean margins. Yesterday and today, two bombshells: I probably need a mastectomy due to DCIS up to the margins and I found out I'm Er-, Pr- and HER2+. First onc visit next Wednesday - I need help and advice.

Thanks,

Sue

jcs13

Sue:

I know being told this is initially devastating. I had a lumpectomy, clean nodes and also ER/PR- and HER2+.  You will probably be treated with Herceptin which is very effective for HER2.  I just had my 2nd chemo treatment today (Taxol with Herceptin for 12 weeks; I stay on the Herceptin for a year).  So far, my chemo tolderance has been great.  Herceptin targets the HER2+ very effectively....I think you'll do fine.  

I've heard that they can do wonderful reconstruction which can even start during your mastectomy surgery.  There is a lot of information on the Breatcancer.org site which helps explain the different options you might be given.  Others can probably provide valued comments as to their experience with mastectomy.

You'll do great 

~Joan 

suemed8749

Thanks so much, Joan. Tonight I feel like I'm back to the night I was first dx - terrified and shocked. My surgeon is very straightforward, and I feel OK about the mastectomy; it's just a shock. My husband is very supportive (I'm 54, married 30 years), and your comments about herceptin are very comforting.

I know I'll be a regular on this thread to learn more about this "bad biology."

Sue

Cathy-CA

Sue -- Please don't think of this as "bad biology".  I was originally considered triple negative and the oncologist was thrilled when on retesting I was Her2/neu+.  Since the approval of Herceptin a few years ago, the outlook for Her2/neu+ patients has improved significantly.  According to my oncologist, Herceptin is the biggest advance in breast cancer in 20 years.  On one of the other threads someone mentioned that her oncologist has not since a single case of breast cancer recurrence in Stage 1-3 patients that have been treated with Herceptin. 

suemed8749

Thanks so much, Cathy. Your dx line sounds very much like mine except dx 1/15/08 and and 2.2 cm. Your encouragement makes me feel SO much better.

Sue

Annaanne

Sue:

Check out my posts on this thread under "dx in 05."  I was also freaked out by my path report, but with herceptin, most of us are really doing well.  And you have a small tumor, neg nodes...You should completely recover.  

I know how scary this time is, but know there are many of us her+, hormone neg,with bigger tumors, pos nodes (some women here had many pos nodes) and still doing great. 

Annaanne 

suemed8749

Thanks, Annaanne! I'm feeling much better today, and it's thanks to you all giving me such support. I'm actually looking forward to meeting with my onc and getting this treatment going. I know that I can turn to those of you who have gone before when I have questions/concerns.

Thanks so much-

Sue

lexi4

Hi Sue,

I just wanted to welcome you to BC.Org. I know how scary this is, but you will find lots of comfort here. You won't have to travel this bc journey alone.

Hugs and Prayers,

Lexi

maryannecb

Hi, Sue,as you cab read there are others like you. Remember that hope is your ally here. Tumor markers can help tailor the therapy but they can not tell you the future. Be hopeful that you have good medicine for your tumor and your chance for cure is very good.

jengrsq

Sue,

        You will do fine. There are many women who are doing great on the herceptin. In Canada we just been using this for the last two years. Like all Canandians we are grateful for this drug now in our country.  I have a friend in the states who is a 8 year survior this year. She was on the herceptin trial when it was brought and she had nodes involvement with a tumor 5cm. There is great hope for you and for all us.

Debbie

Canada

suemed8749

Thanks so much to everybody who has replied. You are a wonderful source of support and information.

Thanks,

Sue

Kerry1000

Just to add my 2 cents - I (and many others) found Herceptin to be very easy to tolerate, I really didn't notice any effects when I was on it.  Much different than chemo.  And while a mast. isn't fun, I also found it much easier both physically and mentally than I had expected.  I had immediate reconstruction which I think helped a lot. 

This board is awesome - an amazing source of information and support.  Welcome!

Kerry 

Sassa

Hey Sue!!

I have just finished one year on herceptin and had no major problems with it.   My problems were minor: weak nails, peeling and cracking fingertips and toes, chills for several hours on the day of infusion, very tire after infusion (I slept like a rock for 9 hours after every infusion).

I had bilateral mastectomies (modified rad on right, simple on left) with no reconstruction.  I love being flat chested after years of being over endowed.

suemed8749

Hi Kerry and Sassa:

I had my first visit with the onc today who confirmed chemo/herceptin, so I appreciate the encouragement. Sassa - I was just relating to you on another thread. My onc wrote the orders for all the scans before mast/chemo, and I, too, have myself convinced that I am Stage 4 at this moment. I know that my mind is creating and magifying these pains in my back, but I still canot wait to find out! In my ideal breast cancer treatment world, they give you the scans IMMEDIATELY after dx rather than leaving you to make yourself sick with worry for weeks afterwards.

Enough of my ranting - thanks for your kind replies which mean so much. I hope to be where you two are in about a year!

Sue

jillybean

Sue...

I was diagnosed in September of '06, a new mom, still breastfeeding.  We all know the feeling of the news.  I did a bilateral mastectomy with my reconstruction at the same time.  I'm glad I did, as I wasn't about to do more surgery than necessary.  I'm waiting for my plastic surgeon to recover from her bout with cancer so I can complete the surgery with nipples.  I did Cytoxin and Taxol for chemo and a year of Herceptin.  I then did an oophorectomy a year later, as I didn't want to chemically suppress something I didn't need anymore.  The chemo made me tired, the surgery wasn't a day at the zoo, but I chose life and I wanted to get everything taken care of "now" for my daughter...for living.  My MRI and CT were both clear, that was 4 days ago.  You'll be fine...you can't let the crazy ladies in  your head get to you.  I send you good ju ju! 

suemed8749

Jillybean -

Thanks for the reply. I can't imagine the terror of this diagnosis so soon after giving birth - you are a courageous woman! I meet with the ps Wednesday to plan my immediate reconstruction, have the chemo plan (also Cytoxin and Taxol) and Herceptin in place with my onc, and I'm doing everything I can now to "choose life" also. Now I just need to keep the crazy ladies in my head at bay, and I'll be fine!

Thanks for the ju ju! Right back at you and your adorable little girl who must be about 18 months right now - what a great age! So glad to hear of your clear scans!!!!!!

Sue

cgarsteck

I am also ER-/PR-Her2+ I will see the doctor thursday for treatment plan. He thinks I will need chemo also. Don't know if I will be able to tolerate chemo, will I loose my hair? Will i be exhausted? so many questions, i guess i should wait till after my appointment.

DX12-27-07, IDC, .2cm. clean mar.

 and nodes Her2+                                         Carrol in terror

Sassa

Carrol, Calm down, deep breath.

Depending on your chemo, you may lose your hair.  Yes, I think going bald is the most soul sucking part of cancer treatment.  But it does grow back in.

You may be tired. But how bad is it to have nights when you sleep like a rock?

You can get through the chemo.

Come back and post in the Chemotherapy area. You will get a lot of support. 

Cathy-CA

Carrol -- He is probably recommending chemo due to your ER-/PR- status. The FDA last month approved Herceptin as a stand alone treatment, so you might ask about only getting herceptin given how small your tumor is which is not chemo. 

A lot depends on which chemo drugs you get, but I am getting ready for my third round this week and have had very few problems.  I have shed much of my hair, but still have enough that I don't need to wear a cap to stay warm.  Each person responds to chemo differently and sometimes even differently to each round, so it's very hard to predict.  I know this is scary, but if you do end up having chemo, you will get through it and will be able to know that you did everything you could to prevent a recurrence.

Sassa

Cathy,

Can you provider a link or reference for this new approval for herceptin? 

I checked the FDA website and can not find any announcement of approval of herceptin as a stand alone treatment.

Cathy-CA

It's on Genentech's (the maker's) website:

http://www.gene.com/gene/features/herceptin/

There are several guidelines of when it's appropriate, but you would qualify under the "hormone receptor negative"  and grade.

------------------------------------------------------
Dx 10/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2+

jillybean

Carrol...

Here's the way I had to spin the whole hair thing:  I'm a new mom and I chose to live, so give me whatever you got in order to see her go to kindergarten, let me experience all those firsts with her.  I chose the radical path and did it right away.  I didn't look back because I didn't want to pore over every bit of every thing and second guess myself.  I trust my oncologist.  I'm here and able to type this.  Hair, schmair.  There are some sassy wigs out there.  I'm not gonna lie, my hair being gone was harder than my boobs, but I countered that with getting 6 wigs.  It was actually fun after I sported the GI Jane look for about a second.  Minnesota winter and bald don't really work.

You'll be fine!  Remember this:  you are neither your hair or your cancer.  Concentrate on being well!

Good luck to you! 

Sassa

I looked at the Genentech's website.  It looks like the drug gained final FDA approval for use in early stage breast cancer following multi-modality anthracycline based therapy.

This means that chemo must still be given using anthracycline (the A in AC).

Edit:  I found the information on the FDA website.

The approval was for a labeling change that was submitted to the agency on 12/22/06.  The approval changed the indication to reflect the use of herceptin in early stage breast cancer following multi-modality anthracycline based therapy.

In other words, the drug labeling now reflects what has been the standard of care in the US for the last two years. (Chemo, then herceptin). 

Dx 12/6/2006, IDC, 1cm, Stage I, Grade 3, 0/9 nodes, ER-/PR-, HER2+

cgarsteck

thanks, After i find out about treatment i will post in the chemo area.

  DX12-27-07 ER-/PR-, Her2+ .2cm stage 1 clear nodes

tomatojuice

hi maryannecb Just wanted to say that your photo is really great-made me chuckle. Laughter is the best medicine -they say-and I believe it. I was just diagnosed. Tumor 2.7cm, HER+ er-pr-. MY surgery is Mar 25th. Right breast masectomy-no reconstruction. Thanks again-love funny stuff.

henny

Hi Tomatojuice

Reading that you are about to have your surgery made me think about this last year. On march 28 2007 I had a double mastectomy followed by A/C Taxol, herceptin, reconstruction and just recently had my new nipples made.

The year ahead will have some rough times and I never thought I would say it, but it does make one stronger. One year ago I couldn't imagine anything good that would come from a bc diagnosis but now I've got great breasts, a chic new short hair style, and boy do I know the value of good friends, family and all the new friends I have made along the way. And I'm learning to eat desert first.

As far as advice -go for the Ativan and make sure they give you whatever you need to get all the rest you can-I lost 15 pounds waiting for surgery because I was freaked out and not sleeping.

You will do great and get through what you have to, to choose life. Next year at this time it will be you who says "Whoopie I made it!"

lkc

just jumping into add my 2 cents! i am almost years out & doing great!

Have faith, tx sucks, but not having it is farrrr worse!!!

Sonn it will be  a memory  & you will be able to put in in the back burner.

God Bless1

Liz08

Cathy-

thank you for the link. Now I have some guidelines for herceptin.

tomatojuice

Just want to say thanks to henny and ikc. It really helps so much to hear what you have to say. Especially in those insane moments when I start feeling down, and expecting the worst.

marejo

Hi Linda,

I was dx in 2005 too.  June of 2005.  I see you are doing well still also.  That is awesome.  I'm happy for you.  I, too, am er/pr neg. and her2+++. 

June 17, 2008 I am finally going to have bilateral DIEP.  I didn't think I wanted reconstruction but now feel I do.  This journey has a way of changing us and finally I feel like I am fine and this cancer just might not be coming back so I'm ready to move forward.

God's continued blessings to you "sister"

Mary Jo