Just switched to Her2+ diagnosis...worried now!

Options
lwarstler
lwarstler Member Posts: 341
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi, I just came from my oncologists office and will try to make this as short as possible. In August I was diagnosed with Triple Neg and never doubted because they ended up doing 3 Her2 tests to get a difinitive answer. I finished TAC treatments in January and just saw a new oncologist for follow up. He said he was looking over the reports because he knew that I wanted to do everything I could to keep this cancer from coming back. So...he asked the pathologist to test the positive lymph node they removed just to make sure. I came back Her2 positive...and now he wants to do herceptin every 3 weeks for a year.

My worry comes from the fact that I am now 3 months out from chemo and herceptin is supposedly most effective if given right after chemo with taxol (or one of those) or during. I couldn't find a single study using this far out and he said there really aren't studies for this far out. Just wondering if anyone else has had experience or been on here long enough to remember someone who did. Of course, I'm also a little frustrated at thinking I was finished with all treatments when I finished rads last week and now found out I'm not done for another year. Thanks for any info...trying not to panic, and the doc is doing a CT scan before we start but I'm a little worried. Thanks. 

· Share on FacebookShare on Twitter

Comments

  • pupmom
    pupmom Member Posts: 5,068
    edited April 2012

    So sorry you're dealing with this! It's really scary how they can get this wrong. I don't know if my positive nodes were tested. Are they usually tested? I guess not or they would have known right after your surgery.  

    · Share on FacebookShare on Twitter
  • Denise-G
    Denise-G Member Posts: 1,777
    edited April 2012

    My Oncologist was on of the people on the forefront of Herceptin and the Her2Neu research.  He would say better Herceptin now than never.  You can't go back.  I am getting Herceptin.  I have had no SEs.

    · Share on FacebookShare on Twitter
  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited April 2012

    I would get a third opinon if the first two differ.

    From what I understand herceptin works fine without chemo. If chemo kills all fast growing cells and the Herceptin locks on to the HER2+ cells then it's no longer a fast growing cell. .  Having too many HER2 receptors can cause cancer cells to grow and divide too quickly and herceptin stops the cell from a fast turnover, which makes me wonder if once the herceptin locks the growth factor if it is longer a fast growing cancer cell and to why taking it with herceptin maybe counter productive.  

    Sounds confusing?  Once the herceptin is locked onto your HER2+ cancer cells it is flagged as a foreign and the killer immune system goes out to destroy it. If the immune is destroyed by the chemo then the immune system isn't strong enough or there to go after cancer cells with the herceptin locked onto it.

    For me the most important thing to do in taking herceptin is to build up my immune system so the herceptin infusions can do their job and the immune system do it's job to destroy the cancer cell with the foreign invader (herceptin) flagging it.

     .

    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited April 2012

    If it helps any to know the history....

    When the trials for Herceptin ended and "they" began giving it to early stage HER2 positive patients, there was a herd of us HER2 positive patients who had completed treatment but never had beeng given Herceptin. They didn't know whether to give it to us, or not. Eventually they decided that it was okay to give it to those who were less than 6 months out from completing chemo treatment, and then later that was increased to recommending that it be given to those who were under a year out from completing chemotherapy. It can make a difference, even when given "late".

    A.A.

    · Share on FacebookShare on Twitter
  • lwarstler
    lwarstler Member Posts: 341
    edited April 2012

    Thanks so much for all your explanations. I feel a little better .

    Yorkiemom: i don't think they usually check, but since I had 2 tests come back borderline and maybe the third (I didn't see that one)...it made this doc think to check again on a larger tissue sample.

     Evebarry: that all makes a lot of sense, thanks for the advice about keeping my immune up. I will look into how best to do that because just a month ago I got Shingles and my doc said it was from low immunity.

    AA and Denise: So good to know about the history. I feel better knowing that the issue has been looked into by the tops in their field. 

    · Share on FacebookShare on Twitter
  • sweetbean
    sweetbean Member Posts: 1,931
    edited April 2012

    Hi there, 

    This happened to me, too.  I thought I was ER/PR + and Her2-, so I did ACT.  AFter my surgery, they tested the cancer that was left - chemo didn't get it all.  Came back Her2+.  I started Herceptin two months after finishing chemo.  I was worried too, but there's not much you can do.  Herceptin is  a great drug and my scans at Christmas showed me to be cancer-free.  Good luck! 

    · Share on FacebookShare on Twitter
  • lwarstler
    lwarstler Member Posts: 341
    edited April 2012

    Thanks sweetbean for sharing....it is sounding like Herceptin really does a great deal for HER2+ so I am feeling a little better about the change in diagnosis.

    · Share on FacebookShare on Twitter
  • Sassa
    Sassa Member Posts: 1,588
    edited May 2012

    lwarstler,

    My oncologist thought I was triple negative and when I finished my 4AC, I was having a follow up appointment that was two weeks after my last AC chemo. We were discussing my options as a triple negative for further treatment (none at that point), when my oncologist decided to look again at my HER2 test result.

    It was at that point she realized the final report was not in my file and had not been received. She promptly left the room, and made me wait while the report was tracked down and she read it.

    She came back into the room with a huge grin on her face and said, "Good news!!!! You are lucky.  You  are positive for HER2 and can have herceptin."

    She marched me down to the chemo room to see if there was an empty chair and had me hooked up to the IV before I could blink.

    I should add that the chemo had reduced my chance of recurrence down to 17% the first year after chemo.  After 3 months of herceptin, my chances of recurrence dropped down to about 7% in that first year after finishing AC.

    Yes, lucky is the word for being HER2+.

    · Share on FacebookShare on Twitter
  • sweetbean
    sweetbean Member Posts: 1,931
    edited May 2012

    Lwarstler, how are you doing?  I'm almost done with Herceptin - one more infusion left!  

    · Share on FacebookShare on Twitter

Categories