stage 3 double neg. HER2 positive

littleangel65
littleangel65 Member Posts: 46
in Breast Cancer #1

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

 

Comments

  • littleangel65
    littleangel65 Member Posts: 46
    #2
    double neg. HER2 positive

    and forgot to mention, 33 rounds of radiation

  • littleangel65
    littleangel65 Member Posts: 46
    #3
    double neg. HER2 positive

    and forgot to mention, 33 rounds of radiation

  • littleangel65
    littleangel65 Member Posts: 46
    #4
    double neg. HER2 positive

    and forgot to mention, 33 rounds of radiation

  • littleangel65
    littleangel65 Member Posts: 46
    #5
    double neg. HER2 positive

    and forgot to mention, 33 rounds of radiation

  • littleangel65
    littleangel65 Member Posts: 46
    #6
    double neg. HER2 positive

    and forgot to mention, 33 rounds of radiation

  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #7
    My situation is very

    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
    muffingranma Member Posts: 107
    #8
    Gabe N Abby Mom said:

    My situation is very

    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

     

    Mine is different also from

    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
    Lynn Smith Member Posts: 1,264 Member
    #9
    muffingranma said:

    Mine is different also from

    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.

    Like what was said

    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
    Lynn Smith Member Posts: 1,264 Member
    #10
    Lynn Smith said:

    Like what was said

    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

    Just read over

    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
    1surfermom Member Posts: 396 Member
    #11
    Lynn Smith said:

    Just read over

    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

    Stage 3 double negative

    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

  • pumpkin4
    pumpkin4 Member Posts: 8
    #12
    littleangel65 said:

    double neg. HER2 positive

    and forgot to mention, 33 rounds of radiation

    Stage 3 double neg her2+

    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.

  • Julia K
    Julia K Member Posts: 8
    #13
    HER2 pos also

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

  • SOG
    SOG Member Posts: 3
    #14
    Julia K said:

    HER2 pos also

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

    HER2 POSTIVE STAGE IV

    HI Julia,

    Hope you are doing well . May I ask if you had any other treatment other than Herceptin?  I am also stage IV ER/PR- Her+, mets in bone and lymphnodes . I just finished my 3 months treatment of weekly Taxol and every 3 weeks Herpectin. Too late for surgery according to the Breast surgeon.  

  • Apaugh
    Apaugh Member Posts: 850 Member
    #15
    Sog

    Please get a second opinon on this.

     

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