Newly dx Stage IIIB, HER2+ and scared.

ImKris10

Hello,

I was just diagnosed two weeks ago. I have a  8 cm tumor in my right breast and a biopsy of a lump in my armpit is also positive.  I tested + for HER2/neu and "mildly positive" (whatever that means) for PR/ER.  I am 43 years old.  

I am trying my best to stay optimistic and have faith that I will prevail.  But when I hear/read things about HER2 like "aggressive" and "poorer prognosis" I start to freak... my chest gets tight and even though I know that's anxiety, I start telling myself scary stories and every little twinge or ache in my body terrifies me.

All of my other scans have come back negative, but that does not change the fact that I have a big, "angry, aggressive" tumor in my breast and cancer present in the lymph nodes under my arm.

I'm going 4 cycles every other week of A + C, then after a two week hiatus, I start on herceptin and Taxol.  If there is anyone who has had similar diagnosis and treatment and is doing well now, I would LOVE to hear from you.

Thanks.

Kristin

swimangel72

Hi Kristin - I'm so sorry you've had to join us on this journey, but Herceptin is a great drug with few side-effects. You can find more information about Her2+ bc and a great support team over at www.her2support.org - it's a smaller group than we are here at bc.org, but the women can give you loads of great info and help. Good luck and hang in there.......and may God's angels watch over you!

ImKris10

Thanks - I will check out her2support!

lkc

Hi Kris and welcome to these boards.

I ws dxed with Stage IIIC  her pos , BC  5 years  ago and am NED.. I was very scared when  I was first dxed. reading the stats and aggresive nature of HER pos disease.  ( I was one of the first on herceptin for non mets)The reality is herceptin has changed the prognosis for us, Please try to take one day at a time. once in tx you will start feeling back in control somewhat , and will feel better

anyway, the stats are outdated and do not factor in us Herceptin girls. Come here often for support and accurate information.

fightinhrd123

Hi there,

I had pos nodes before chemo, had chemo and herceptin, and no cancer left at surgery. Hang in there!
Laura

KerryMac

Hi Kris,

I was Diagnosed in October, 08, when I was 42. Stage 3 with a big ass tumor and positive lymph nodes. I know how scary and overwhelming this all is. But trust me, it does get better!

Just take one day at a time, do not get too far ahead of yourself. There are so many women doing so well these days, the treatments work!  Stats are outdated, and have nothing to do with you as a person.

Use these boards often for support and advice. Do not use Dr Google!!

We are all here for you. 

SusieMTN

ImKris10  - You have come to the right place.  There are many wonderful women here that will inspire you and help!  The one good thing in your favor is that being HER2 means there is also one more drug used to battle this disease. 

I was diagnosed 22 July '08 with an 11 cm tumor, locally advanced.  My breast barely looked like one, retracted nipple, dimpling, swollen and slightly red.  I was so scared I could barely breath, but I got thru.  Once I was ready for Chemo, my state of mind was BRING IT ON!  I had Chemo up front and it did its job, by the time I had surgery there were just a few cancer cells left. I was so delighted when my breast dent disappeared and looked once more like a breast!  

As said above, come here and read.  Lots of good advice and caring women who have been thru treatment.  This site was my life saver! 

Best of luck to you and let us know how you are doing!

geewhiz

Hi and welcome to our club. We have similar situations. I am er/pr positive and her2 positive as well. I did tchx6 and now get herceptin every 3 weeks. LOTS of positive nodes. Its really scary at first, but as you heard, it gets easier. Some days are good, some are days where you will want to come back for support. We are here with you and for you  

RebzAmy

Hi Kristin

Another one here who had a lump in breast and large lump under arm. Grade 3, breast cancer and HER2+++ I was diagnosed in June 2007 and currently doing well. It was very scarey and especially knowing that being HER2+ could mean the cancer was more aggressive but the chemotherapy worked well - I had 3 lots of FEC and 3 lots of Taxotere and started herceptin with the Taxotere.

Hope this helps with your worries a little at least

maryannecb

My tumor was big and bad too...did similar treatment coming up to 5 year mark...doing well,living as before with minor thoughts of BC...havent had my first never thought about it at all day but think it will happen soon.

You can do this.

Annaanne

Hi Kristin:

I think my original dx was very very much like yours (except er/pr-).  I only know I had neo adjuvant chemo and still had a 6cm tumor and one grossly pos node after 6 mos of chemo and some herceptin.  But I finished my year of herceptin, had rads and 5 years later (I was dx in May of '05) I am totally recovered.  My path report had "poor prognosis" written after every item.  My tumor was so aggressive that one oncologist actually said it gave him the heebie jeebies (thank you very much.)  And yet again, I'm totally fine!

We all know how you feel right now and how scary it is.  Hang in there.  Use this site.  You'll get through it.  Many of us have been where you are now.

Best

Annaanne 

diana50

hi kristin

glad you found us; there are many newly diagnosed ....in treatment....finished treatment...and beyond treatment strong women on the stage III boards.  as kerry said' don't get too far ahead of yourself; ask any questions that come up...come to the boards....lots of experience here.  they will shrink that tumor...the chemo's are very effective these days...and all the treatment available.  communicate with your cancer team; nurses...docs...ask questions and be proactive .  very important to take care of yourself; rest and drink water.  i got myself into a support group when i was diagnosed at my cancer center and for me...that was very helpful. 

 allow yourself to feel your feelings; even the scared ones...sad ones...they are important too. one day at a time....hang in there. come to the boards or message people if you need to.

hugs.

diana

Let-It-Be

I wish I logged on here in the beginning of diagnosis like you!  These posts are inspirational and should give you that chance to breathe deep and believe you are not a statistic.  Good luck with your treatment, check back with us often.  Big HUG.

kimber3006

Hi Kristin!  We had a very similar diagnosis - I'm also her2+ and weakly ER+.  A month and a half ago, I finished the exact same chemo you're planning.  It wasn't fun, but wasn't nearly as bad as what I had worked up in my mind.  I've got 2 more weeks of radiation left and go back every 3 weeks for herceptin (which is a piece of cake on its own, btw).  You know what else?  My onc told me from day 1 that her2+ used to be a very bad thing, but that with herceptin our odds are now just as good, if not slightly better, than if we had been her2-.  There are lots of ladies here many years out, doing great, and even more out there just living their lives without a thought to bc anymore.  No reason you can't be one of them down the line.  Check out the "Stage 3 - Five Years Out" thread - always great for a pick me up. 

Hope_M

Hi, Kristin-

Maybe this will help you have hope:  I had a 9 by 8 by 2 cm tumor with 4 positive nodes (one of which was over 2 cms and "exploded" with cancer).  This was SEVEN years ago- May of 2003 at diagnosis.  I thought that it was a death sentence, but it wasn't.  When you read that her2+ is "aggressive"  that is because it grows so rapidly and is highly mutated.  Lots of us premenopausal women have this diagnosis.  But with the advent of Herceptin, I think that the scary nature of this diagnosis should have diminished significantly.   (Just my opinion, of course.)

Hang in there.  Others have been where you are and a positive outcome is very possible.  Treatment is rigorous and can be daunting, but many of us have passed through that valley and emerged successfully (and healthily) on the other side.

Good luck,

Hope M.

helena67

Another 'me too'. My tumor was also big with some beginning skin involvment, about 8x9 cm.

Came out of nowhere - I was so depressed and scared, I will never forget that. But it gets better with time. Now I am almost 2 years out and still doing OK...So can you.

You are getting a state of the art treatment. Hang in,

Helena.

jenn3

Hi Kristen - I know this isn't where you want to be, but welcome........My dx is a different than yours - I'm triple negative, but can understand the feelings you're having at this time.  Overwhelmed with fear, questions and worry......this is normal.  Like the others have said, take it slow, one day at a time and know that you can come here for support, ranting or just to talk.  These boards are full of information.

Jenn

LibraryJenn

Hi Kristin,

 I'm in your boat!  I have stage III (not sure of the letter behind this, but probably b as it's also labelled "agressive") HER2+, hormone negative breast cancer that started with a 9 by 9 cm tumor in my breast with lymph node involvement.  At this point we don't know how many nodes are involved but the cancer is very aggressive, so the oncologist is treating me as if they are ALL cancerous (I started chemo within two weeks of finding out and didn't get in for the MRI before hand.)  I go for my bone scan on Tuesday to see if it's spread to my bones, but my x-ray and ultrasound showed clear lungs and liver.  I've always been one to look for a silver lining, so here's my opportunity! 

I started chemo on May 21st, and go for my second round on June 11th provided my white cell count is high enough.  I am on the same chemo as you, but they do it a bit different in Canada, which A+C every three weeks (4 rounds) and then start the Taxol for 4 rounds every three weeks, and herceptin for a year.  After the chemo, I'll do surgery and then radiation.  Either way, I'm hopeful that the chemo will continue to shrink the sucker down; it has already come down to 8 x 8 cm in just two weeks.

Here's the kicker - I'm 28 years old with a son who is turning two next weekend.

Either way, I'm very glad that I've found your post, and I hope that we can get through this very scary time together.  

Jenn

ImKris10

Wow, wow, wow.   

I feel so much better knowing there are others who are in the same boat as I am (or who have sailed in the same boat and have reached the shore!)

I'll take some time to post replies individually - but just a big group "THANK YOU" to all of you. 

  Kristin

paml

Hi Kristin,

Diagnosed with stage 3B in December of 2008. Had chemo, bilateral mastectomy, and rads.  Starting to think about this disease less and less each day. Hang in there. We are all here for you.

Pam

Mom3

Hi Kristin. Wish we didn't have to welcome you but welcome!

Okay, get this. I was 37 when I was diagnosed. My tumor was HUGE!! Seriously, it was 11cm, I had 15 of 18 nodes positive. I was ER/PR and HER2 positive (triple positive). I was scared outta my mind!!! At the time I had a 1 year old and a 3 year old. I kept thinking of how I was going to leave them without a mother and after 17 years my high school sweetheart without a wife. I have had everything under the sun done.  Radical mastectomy, chemo, radiation, oopherectomy (only ovaries out), Herceptin for a year and I'm currently on Arimidex and go in for Aredia infusions every 6 months. Yup, it's not an easy road but it hasn't been all that hard either. Along the way I decided to learn new ways to improve my health (although I've never been heavy by any means) I decided to eat healthier and excercise more.. Recently I began juicing every day. Loving it!  I ran my first 1/2 marathon in Feb and ran my second 5k with my now 5 year old daughter!! I am 2 1/2 years cancer free and loving every minute of it!! You're going to be fine!!! It's hard to accept, believe and know it now....but you will get 'here' one day!!!  

lizzyanne

I  have also just recently been diagnosed with the same cancer. I start my chemo on Monday. In the last 5 weeks I have already had a full mastectomy on the right side 4/15 lymphs positive and had to have lung surgery that turned out not to be related to the cancer in addition to all the tests etc. I am encouraged to read your comments. I am having lots of teary days lately and you give me hope.  Thanks

clariceak

lizzanne  -  Wow,  You've been through so much in a short amount of time.  This group can be a great source of comfort and information.  If you're feeling down be sure and check out the thread posted from survivors of 5+ years. 

SpunkyGirl

Kristin,

The women on these boards have been my best support group.  At Stage III, we've experienced it all and we know what you are going through.  Keep coming here for support and take it one day at a time.  To me, that was always the best way to deal with it.  I found that if I tried to look too far into the future, it was just too scary to contemplate, so I realized I had to stick to one day at a time.  Almost four years later, here I am and very thankful for it.  You can do this.  Try not to read too much-just concentrate on getting through your treatments.  We are here for you!
Bobbie

nobleanna007

I just wanted to put my 2 cents in, whether its welcomed or not.

 I am triple positve with %100 ER+ PR+ Her-2+++ with 5/28 lymphnodes positive with a huge tumer. I had a Bilteral with reconstruction and to put it plain and simple its been hell!!!! I did not tolerate any of the meds and rejected one expander,got lymphedema during Rads etc. I still live with the side effects of it all, and yes I am bitter. I was a active wife, mother, worker till this happened and it totally changed my life. I know and have had a good friend go through the exact same treatment and fly through it. I do not consider myself a person who thinks the worst, I always try to look on the positive side of things had 2 children naturely without drugs so consider myself a prson with high tolerence to things. But man this has brought me too my knees. I just feel everyone needs to hear the truth whether its the good, bad or ugly!!!! And I am sorry too say mine and still is ugly! I will never be the same person know matter how hard I try or try to make myself its just what it is. Not to say other's will go through it as rough as I.

I am thankful to be alive and somewhat healthy but at times I have in the back of my mind if I would do this over again and my chances of reoccurence is on the high side so I guess I will wait and see at that time!

I wish everyone luck and a smooth road and some of us will have it and some won't but don't feel bad or a wimp like I did for awhile till I understood what was happening, we ARE here for you!!! Some will listen and other's won't but know you are not alone if you happen to have the struggles some of us had!

HUGS

Bridget

1

lizzyanne

I just had my port inserted yesterday (they had to put a child size one in due to my small bone structure and small veins.) It really knocked me out - I thought it would be easy compared to all the other things I have been thru these past 6 weeks but no....it is painfully uncomfortable right now and the pain meds they give me make me feel tired and headachy, so I would rather not take them. I am looking forward to the day that I can sleep on my side again. I have had to sleep on my back since my mastectomy (May 7th). 

I'm sorry to hear about nobleanna - your side effects are what I worry about.... 

I'm glad I found this group. Sometimes you just get tired of people telling you that you can fight this thing and you will get thru chemo when you know that they have no idea how you really feel. Especially when you still look so normal on the outside .

blondie45

Bridget - Your post pretty much sums up my feelings also. Very happy to be here but yeah lymphedema, lopsided (I still after 1 year feel so lopsided with having unilateral), low ejection fractions so heart meds, tamoxifen and all the side effects with all this carp. How do you begin to figure out what the heck med is causing any of your side effects when you take so many. I also have fibromyalgia so never know how many of my symptoms are from that to begin with. I am trying to eliminate my Ambien and lorazepam. Again, I agree after 1 year physically I am no where near where I wanted to be and it does suck.

negirly

Kristen - I'm another one with a large tumor (over 10 cm) - don't let that scare you.  There are people with big tumors who did great and small ones with a recurrence.  I was also HER2+.  herceptin is a great drug and we are fortunate bc it is relatively new. 

Best of luck...

Karyn

kimber3006

lizzyanne - Sorry you're having a tough time with the port.  I have a bony chest and it took me a long time to get used to mine sticking up so high, though the incisions healed quickly.  Hope you feel better soon.

Pure

Hope your ok and hanging in there....There is life on the other side of this and you will get there... One foot in front of the other!

lago

Most of the stuff you read online is old information.  The stats are from cases pre 1998 (American Cancer Society stats that every site copies)! Herceptin hasn't been standard practive for HER2+ until recently. I have been reading lots of positives regarding this drug. There are also others in the works (close) that might also be available if Herceptin isn't for you. HER2+ is not as dismal as it was when the stats were collected. They have something for us that seems to be working!

They are also better now at deciding the dosage of the chemo/drugs then they were 12+ years ago.

 You also don't know how the chemo will respond. That's a big factor too. Having a small tumor that isn't affected by chemo is worse than have a huge one that does.

Our cases sound similar. I'm 49 premenopausal triple positive with 7cm tumor maybe bigger/smaller (PR might be mild) in the left breast. Right now they don't think there is lymph node involvedment but they are going to remove all level I nodes. Doesn't appear they are doing chemo first. I am a bit concerned about the angiogenesis but not 100% sure how the drugs attack that issue.

Tomorrow I'm getting an MRI (checking out the other breast. I have "very dense" breast tissue so that's why it took so long to find this). Also tomorrow BRCA testing and another chest x ray (first one had a shadow that they are pretty sure is my nipple).

I still don't have a surgery date yet. This is what is making me really uncomfortable. Do let me know how you're progressing. We will get through this.