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stage 3 double neg. HER2 positive

littleangel65
Posts: 46
Joined: Jan 2013

I am new to this site, I was dx on Jan. 28, 2012.  I notice a problem (discharge from my right nipple) back in '08, my husband was getting ready to be laid off, but I did get my mammogram prior (just a wk. before his lay off), at that time, my doctor didn't see anything, but he did tell me to keep an eye on it.

what else was I going to do? I mean I had no insurance at this time, we lost everything due to the economy in 2009.

I finally got a job with insurance, went to the doctor, to find out, I am now stage 3 double negative, HER2 positive bc.

Just wondering if anyone else has this, and how you maybe responding to treatments.  I have had my right breast removed,  4 rounds of chemo, almost done with my 1 yr. of herceptin, and my doctor is talking about putting me on Tykerb.

linda

 

littleangel65
Posts: 46
Joined: Jan 2013

and forgot to mention, 33 rounds of radiation

littleangel65
Posts: 46
Joined: Jan 2013

and forgot to mention, 33 rounds of radiation

littleangel65
Posts: 46
Joined: Jan 2013

and forgot to mention, 33 rounds of radiation

littleangel65
Posts: 46
Joined: Jan 2013

and forgot to mention, 33 rounds of radiation

littleangel65
Posts: 46
Joined: Jan 2013

and forgot to mention, 33 rounds of radiation

pumpkin4
Posts: 8
Joined: Sep 2011

I too was stage 3 er/pr neg and her2 pos. I had 12 weekly doses of taxol and herceptin, 4 does of AC, neoadjuvant chemo because my tumor was over 5cm and was attached to the chest wall and spread to the skin. I then had a double mastectomy with immediate reconstruction using my own tissue. then 33 rounds of radiation and 1 yr herceptin. I finished 1 month ago. My cancer responded well to treatment and was less than 2cm by the surgery. I will be honest I am very nervous about reccurence since it was so aggressive (from a pea to a lemon in 3 months.....scary). I also have heart damage from the herceptin, I guess most of the time it reverses but, mine has not. My cardiologist said it will proably be permanent, although, it is managable. Everyone is different, no one knows what the future brings except God. I have 2 good friends both in similar situations, one is 10 yr survivor, the other passed away within 3 yrs. Live your life to the fullest and hopefully this horrid disease will never return. Best wishes and Hugs.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

My situation is very different than yours (triple neg inflammatory bc) so I don't really have any advice.  I do want to welcome you to the site, I'm sure you'll find the people here knowledgeable and compassionate.  It's a great place to ask questions, vent, share your joy and your challenges.

Hugs,

Linda

 

muffingranma
Posts: 107
Joined: Sep 2012

Mine is different also from yours. I am sorry I can't help either but I wish you the best. I don't  understand a lot about differen't cancers and sorta new here also. I will pray for you.

Lynn Smith
Posts: 1265
Joined: Mar 2011

Like what was said everyone is different. I know 2 of my friends were Stage 3.One had 3 nodes involved and the other had 1 node invloved.One is a 18 year survivor the other a 7 year survivor.Both doing fine. Also Both had chemo and radiation.The 7 year survivor was told her cancer was a very aggressive fast growing cancer but so far her mammos have been clean.Also Both had lumpectomies. 

Last week I had my mammo.I'm a 3 1/2 year survivor(no mammo for a year). DX Stage 0 no chemo or radiation but take tamox.Although I've had some scares the last 3 1/2 years everything turns out fine.

WISHING YOU THE BEST!!!!

Lynn Smith

Lynn Smith
Posts: 1265
Joined: Mar 2011

Just read over your post.I'v had a inverted nipple for almost 13 years.I didnt know I had a inverted nipple till it was mentioned at a mammo exam.The nurse questioned it and said it could be cancer.Wasn't and never had any worries.Nothing was said about it till my dx with breast cancer.Now they keep a eye on it.I did have drainage like you within the last year so they did a mammo.it was clean.I guess this will be ongoing for me.This is the right breast not the left where the cancer was. 

Lynn Smith

1surfermom's picture
1surfermom
Posts: 259
Joined: Mar 2009

Hi Linda,

I was diagnosed with stage 3 double negative breast cancer almost 4 years ago. My cancer was very agressive and fast growing and at the time I was terrified so I know what you are going through. I had neo-adjuvent chemo and then spent a year on herceptin. I was a part of a clinical trial where I was given Tykerb . I'd be happy to share my experiences with you . Feel free to send me a csn email and I can go into all the details. Love Surf

Julia K
Posts: 8
Joined: Aug 2012

I'm HER2 pos also but was stage IV. Taking herceptin every three weeks Since 09. So far so good. Hugs to you-

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