Her2 Positive with Estrogen negative Surviors Stories wanted:

GraceB

Wow, I came on to this subject a year late!!!!  I was Dx in Sept. 04.  Her2 pos.  er/pr neg.  Stage 2.  Had a double mast. with implants.  Did the ac/taxol chemo regimen and then thank the good Lord Herceptin came out of trials.  I was not eligible for Herceptin in the trials because I had previously had a melanoma.  So when in April just before I started my rads I was very happy to hear that it came out of trials.  Sooooooooo with all that said I have been dancing with NED since Nov. of 04.  On the 16th of this month I will celebrate my 4th year.

egal.....I'm hoping that they can find something that can put you into a remission state.  Prayers and hugs your way!!!!

CM....I had to stop my herceptin for about a month.  My numbers weren't in line but then I went back at it again 8 weeks later. 

Good luck to all of you!

Grace

Maryiz

Ladies, HER2 positive girls may have the vaccine to look forward to, a few of the universities are working on this vaccine.  RIght now it is for HER2 positive and looks very promising.  Other vaccine trials will follow.  I think it would be nice to have this in the arsenal. I am not HER positive, but would love to hear there is a vaccine for all of us.  Maryiz

soriya123

bump!!!

Slainte

I guess I count as a survivor story .  I was diagnosed 3 1/2 years ago and finished my chemo about 3 years ago.  Finished herceptin Nov 2011.    Doing well, enjoying life.  

Christine 

soriya123

congrats on your 3 1/2 yrs slainte! wishing you many more years!!!

Girlstrong

Slainte:  you do count as a survivor...3 1/2 years is awesome....Congratulations girlfriend and thanks for posting.  We BC sisters need that. 

lkc

heading into yr 9( in 2 mos) of a stage IIIC , er/pr neg, HER2 pos. BC. NED!!!

Girlstrong

Lkc:  awesome!!!!!!!!!  I live that story. Can I ask what was your treatment? 

lkc

Girlstrong. I had the same tx  as you except for the Perjeta, which wasn't available to me.

I also followed the Breast Cancer diet; Google it. and swear by  daily Flaxseed.

Girlstrong

thank you lkc...I'm off to google

codi10

I am one of the lucky 406 women selected for the "light" chemo trial of Taxol and Herceptin. Initially, my biopsy was estrogen receptive; however, the lumpectomy showed only "scant" receptors. I was then told of this trial out of Dana Farber in Boston. I was diagnosed in July 2009, had my lumpectomy in Sept., 2009 and began treatment in Dec., 2009. I live in a suburb of Boston and received treatment at Mass General.  The results of this trial were published at the San Antonio Breast Cancer Symposium in December of 2013: the 3.9 year disease-free survival rate was 98.7% and the three year recurrance-free interval was 99.2%

It will soon be 5 years since my diagnosis & surgery later this year, and I am grateful to be part of this statistic!!! There is a light at the end of the tunnel!!! :-) Keep the faith!!

Mausie

Hello!

Sorry I am so late in answering this - I didn't see this, even though I was looking for ER/PR negative, with HER2 positive years ago. I was diagnosed with that pathology in 2006, and was NED until September 2013 (7 years free of cancer) when another tumor which was ER/PR+ but HER2 negative, appeared in the same breast (I had had a lumpectomy + rads). The 2006 tumor was at the 12:00 position, and the second, ER+ tumor was at the 4:00 position. The first tumor was 2.5 cm but the second one was only 1 cm. I have no idea what stage that would make me now, or how you even figure that out, but I wanted to write this, because after the ER/PR negative HER2 positive tumor, I made it for 7 years, NED.  

I am  now on tamoxifen for the latter tumor.  As I understand it, whether or not lymph nodes are involved is the big indicator of whether or not you will relapse. Both of my cancers were lymph node negative. 

I have a friend who is a pathologist and he said that BC can often "change their spots" meaning it could be the same cancer which returned, or it could be a completely new cancer, nobody knows. Apparently we get little cancers all the time, and our body fights them off (well, sometimes fights them off). 

In any case, have HOPE. When I first got cancer I was scared to death. Now that I have seen so much and read so much I think we can live a lot  longer than I originally thought, even with metastatic disease. 

The two things I have done is to exercise more, and after reading the article on this site about drinking alcohol, I have stopped it altogether. I didn't drink that much to begin with, but I do believe it increases the risk of getting a recurrence, from all the research articles I have read. 

Best of luck to you

annika12

mausie- congratulations on your 7 years and on fighting twice , you rock in my book !!! Even though the tumor was er/PR - my onc. put me on tamoxefin For that reason , I guess he might know what he us talking about lol. Thanks for sharing

Pipandor

I wonder if this thread is forgotten because there aren't many of us or because we don't live that long. Not yet confirmed by biopsy but an MRI just revealed what strongly suggests a cancerous lesion. Guess I'm part of the lucky 10 per cent of early stagers who get taxol and herceptin and do recur.

DogMomRunner

Hi Pipandor- I hope that it's because there are only a few of us. I'm sorry about your MRI results. Your original diagnosis is similar to mine so obviously I really hope you don't have a recurrence or anything else. I'll keep you in my thoughts.

Pipandor

Thanks DogMomRunner. Still hoping against all odds that the biopsy will be ok.

Alicethecat2

Hello DogMomRunner and Pip

You'll see from my info that eight years ago I had a similar diagnosis to you.

Doing well and trying to good and hoping for the same for you.

Best wishes

Alice

Pipandor

Thank you Alice. I wish I had had a mastectomy the first time too.

DogMomRunner

Alice and Pipandor- I wanted a mastectomy because I figured that at least it couldn't come back in a non breast. Of course that's before I knew about it recurring or popping up as a new cancer elsewhere. I still wish I had had a BMX because I'm really nervous about my annual mammogram and my dense breasts. Not that a mastectomy/mastectomies is easy. Or prevents a recurrence.

Girlstrong

I’m here!!! 🙋🏻♀️🙋🏻♀️There may not be much action on this thread because several of us are doing so well. 😊 My road has Been bumpy, had its ups and Downs but I’m here!!! You can see from my bio that I was diagnosed in 2013 . Sometimes it feels like forever ago and sometimes it feels like yesterday. I have my annual MO visit in a couple of weeks and I still get “extra” tests and follow ups because I’m part of the KATHRYN trial. Wherever you are in your journey ..I’m send good juju your way.

Pipandor

Just back from an ultrasound with a ton of bricks lifted off my chest. The lesion found on the MRI has no blood supply and smooth edges. The surgeon thinks it's a fibroadenoma. No biopsy required but a follow up ultrasound in six months. The cancer roller coaster has to be one of the scariest rides ever.

DogMomRunner

Yay!! Good news Pipandor!!

etnasgrl

I was just diagnosed yesterday with ER-/PR-/Her2+ after 4 years NED of ER+/PR+/Her2-. This time it's in my left breast, last time was my right. (Time for a bilateral mastectomy, for sure!)
My last mammogram was in April of 2019, it was clear. When I went for my mammogram this month, this tumor did not show, but I had an ultrasound done as well and the radiologist barely saw this sucker. When she did, she thought it was possibly a fibroadenoma, but wanted to biopsy, just to be extra cautious, given my history. I'm glad she did! Anyway, this new beast is small, 8mm and because it is, I will move forward with a lumpectomy/sentinel node biopsy first and then start chemo/Herceptin later in the week. Once all done, I will have the bilateral mastectomy with reconstruction.

Anyway, I know this type is more aggressive than my last diagnosis and am pretty scared. It helps to hear so many of you ladies with such great success stories! Please keep them coming! I can use all the encouragement that I can get!

DogMomRunner

Hi etnasgirl - sorry that you've had a recurrence/new BC. apparently we are a small group (ER/PR-, HER-2+). Herceptin has been a game changer for this type of BC.My tumor was right over the 1cm mark and I got the Taxol/Herceptin combo along with radiation. Taxol was a pain but not as bad as some of the other chemo. I had hair loss of course and nausea but luckily no neuropathy (I iced my hands and feet). And managed to work full time during it. Herceptin side effects have been minimal but you will get echocardiograms periodically to check your heart.

There's a Taxol thread under chemo that is very helpful while you're getting that. If you do go that route that is. There is also a FB group for HER-2 that is pretty lively.

Pipandor

A little late coming back this year because a breast MRI revealed a small lump. It was scary, but a follow up ultrasound showed only a benign fibroadenoma.

SO, four years after surgery, I am still NED and counting my blessings. My thoughts go out to those undergoing treatment right now. It isn't easy at the best of times and must be super stressful right now. Take good care.