How do they know if HER2+ is gone

tommaseena
tommaseena Member Posts: 1,769
edited March 2014 in Breast Cancer #1
How do Dr.s' know that the HER2+ is gone after all treatments? Do they do scans or biopsy on tissue? These are some of the questions I will be asking my oncologist today.

They know Herceptin targets the HER2+ but how do they really know it is gone or in remission.

If anyone has asked the answer to their oncologist I would like to know what the answer to this was.

Thank you.
Margo

Comments

  • rjjj
    rjjj Member Posts: 1,822 Member
    #2
    Good question
    I would be interested in hearing what your oncologist has to say. Please let me know what you find out.I bet someone knows the answer to this. If it is like everything else..it's not gone but in remission or NED. Sorry i was not much help, but now i am also wondering.
    God Bless
    Jackie
  • mimivac
    mimivac Member Posts: 2,143 Member
    #3
    Her2 gene
    Margo,

    I'm not sure, but Herceptin is designed to treat people whose tumors overexpress the Her2 gene. Herceptin targets HER2+ cancer cells and tells your body's defense system to eliminate them or prevents the HER2 cells from growing and dividing. If you have had surgery to remove your cancer, then chances are there is no measurable tumor to test whether Herceptin is working. In this case, Herceptin addresses any possible microscopic disease left behind, and helps prevent the breast cancer from coming back. Like chemotherapy done after surgery, there is no way to know for sure whether it has targeted all of the microscopic HER2 cancer cells.

    Mimi
  • tommaseena
    tommaseena Member Posts: 1,769
    #4
    update
    I asked my oncologist "how will we know if the HER2+ is gone?" She said that they don't test using blood or tissue and the docs go by the clinical data that they have. People that were treated with Herceptin had less recurrence then those who did not have Herceptin and that is what they go by.

    Now I know.

    Margo
  • libmama
    libmama Member Posts: 5
    #5
    tommaseena said:

    update
    I asked my oncologist "how will we know if the HER2+ is gone?" She said that they don't test using blood or tissue and the docs go by the clinical data that they have. People that were treated with Herceptin had less recurrence then those who did not have Herceptin and that is what they go by.

    Now I know.

    Margo

    Herceptin
    My dr. told me the same thing. I thought there would be some kind of test or something, but I guess not. It would be nice to know, tho, wouldn't it. So really, we won't know if we still have cancer till it causes some strong symptoms, is that what it seems like to you guys? Kind of scary.
  • Kitty3571
    Kitty3571 Member Posts: 48
    #6
    libmama said:

    Herceptin
    My dr. told me the same thing. I thought there would be some kind of test or something, but I guess not. It would be nice to know, tho, wouldn't it. So really, we won't know if we still have cancer till it causes some strong symptoms, is that what it seems like to you guys? Kind of scary.

    Kind of scary? I agree.....
    I agree that there should be some way to test, even if it's annually that the Her2 hasn't started up again. I was on Herceptin for 1 year and when finished, I was upset. I told my Onc that now that treatment is being stopped I felt like I wasn't doing anything to stop the possible recurrence of my cancer. I know that they only go by recent clinical trials and that determines treatment plans and how long a patient is to receive certain meds.

    One would think that I should have been happy to not be receiving any treatment anymore...which I was, however by being Her2, ER/PR Negative and not being put on anything at all, it kind of feels like I'm not fighting off the beast and at any time it could return. No blood tests, no meds - nothing. Only annual mammogram. What if the mammogram doesn't catch it's return early like before?

    I'm sure everyone has these fears of recurrence. Just thought I'd add my thoughts to this interesting post for us Her2'ers out there. Have hope!

    Thanks for listening :)
    Trena (kitty3571)
  • Bill.S
    Bill.S Member Posts: 177
    #7
    HER2/neu +
    I was extra lucky, I'm ER+,PR+,HER2/neu+. So it is herceptin for a year and tamoxifen for 5 years.
    I too wish that there was some kind of a test to put my mind (what there is left of it) at ease.
    CANCER SUCKS
    Bill S.
  • ngrab130
    ngrab130 Member Posts: 2
    edited June 2017 #8
    libmama said:

    Herceptin
    My dr. told me the same thing. I thought there would be some kind of test or something, but I guess not. It would be nice to know, tho, wouldn't it. So really, we won't know if we still have cancer till it causes some strong symptoms, is that what it seems like to you guys? Kind of scary.

    Her2+

    I too feel it is so scary!  I have/had Her2+, finished 6 rounds of chemo including Herceptin then bilateral mastectomy with removal of nodes.  But my lymph node border was not clear.  I am on Herceptin for 13 rounds.  My ONC wants me to see the radiation specialist to see if we should do radiation in addition to the Herceptin being overcautious.  Which is fine with me!  Has anyone  had similar or same experience and if so what did you do and how has it fared?  

  • amydlutz
    amydlutz Member Posts: 1
    #9
    ngrab130 said:

    Her2+

    I too feel it is so scary!  I have/had Her2+, finished 6 rounds of chemo including Herceptin then bilateral mastectomy with removal of nodes.  But my lymph node border was not clear.  I am on Herceptin for 13 rounds.  My ONC wants me to see the radiation specialist to see if we should do radiation in addition to the Herceptin being overcautious.  Which is fine with me!  Has anyone  had similar or same experience and if so what did you do and how has it fared?  

    triple positive and same situation

    I am triple positive and yup, did Herceptin for a year after the 6 rounds of chemo, bilateral mastectomy with lymph node involvement, and 6 weeks of radiation.  I'm also taking Aromasin daily for 5 years and monthly Zolodex shots for a couple of years.  I just came back from a follow up with my breast surgeon who said IF it comes back, I'd see little red marks like mosquito bites that don't go away.  I will go for reconstruction in a couple of weeks!

  • HapB
    HapB Member Posts: 527
    #10
    Bill

    Are you doing the Herceptin without Taxol?

  • ngrab130
    ngrab130 Member Posts: 2
    #11
    ngrab130 said:

    Her2+

    I too feel it is so scary!  I have/had Her2+, finished 6 rounds of chemo including Herceptin then bilateral mastectomy with removal of nodes.  But my lymph node border was not clear.  I am on Herceptin for 13 rounds.  My ONC wants me to see the radiation specialist to see if we should do radiation in addition to the Herceptin being overcautious.  Which is fine with me!  Has anyone  had similar or same experience and if so what did you do and how has it fared?  

    Same plan as you!

    I'm in exact situation as you Her2+.  Had chemo, bilateral  mastectomy and doing 13 rounds of Herceptin Thru end of 12/17.  I am in middle of reconstruction and must complete before I can start 5 weeks of radiation "to mop up". Worried S little about radiation.  Any help out there about radiation?  

  • HapB
    HapB Member Posts: 527
    #12
    ngrab130 said:

    Her2+

    I too feel it is so scary!  I have/had Her2+, finished 6 rounds of chemo including Herceptin then bilateral mastectomy with removal of nodes.  But my lymph node border was not clear.  I am on Herceptin for 13 rounds.  My ONC wants me to see the radiation specialist to see if we should do radiation in addition to the Herceptin being overcautious.  Which is fine with me!  Has anyone  had similar or same experience and if so what did you do and how has it fared?  

    Her2+

    Well, this is an old thread and the truth of the matter is that the only clinical data that they have remains the five year studies.  Herceptin is stopped after 5 years because the research is generally done for 5 survival rates. What the data does not tell is what happens after year 5. It is scary, but that is the way medicine ia handled in this country. in many cases, doctors have to look to studies done in other countries. 

  • Kats2
    Kats2 Member Posts: 126
    #13
    Tumor marker screening?

    Hi Her2+ people,

    Would monitoring your tumor markers in your bloodwork help to see if your cancer is under control? I'm not Her2+, but I have my markers checked each month to watch for trends as to whether my cancer is still there or not. In my case I'm Stage 4 and watching my tumor markers is important. This way we can monitor whether my drug treatment plan is working, or whether I need to be switched to another drug.

    There are some people who don't get accurate results from tumor markers, but the majority do. It just gives your Oncologist a quick look at the status of your breast cancer. Are the #s low or are they escalating, indicating that you need a scan to get a better look at what's going on in your body?

    My first Onc did NO bloodwork or scans on me. If he did, he would've seen that my BC was metastising to my bones. My new Onc does tumor markers and uses them along with scans to see if I'm doing well or not.

    The thing is: Some doctors do the tumor markers and some do not. In my case, I need to be watched very carefully for progression. My Oncologist is doing a good job watching me as he says, "Like a hawk." He knows I received sub-par treatment with Onc #1 and the Breast Clinic that he's associated with. Thank God I changed to him!

    Wishing everyone good days ahead!   Kats2

     

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