3 different path reports

elizagain
elizagain Member Posts: 43
edited March 2014 in Breast Cancer #1
My doctor has had my pathology report done 3 times. Each time it has come back different. Based on the last one, she has decided that I have to have Chemo and I cannot do Femara or arimidex. The 1st path was ER negative, PR 75%; the 2nd was ER 19%; PR negative, and the last one - are you ready for this? - ER negative, PR negative. All 3 showed HER2/NEU 3+/ My question: has anyone ever had this experience? I feel like I'm on a roller coaster and my wonderful T1N0M0 Stage 1 has gone to hell in a handbasket.

Comments

  • paddy0214
    paddy0214 Member Posts: 3
    #2
    In 1996 I had a tumor that tested neg for estrogen and had it retested and it came out pos. In your situation, I would really question the validity of the labwork.... is it possible to send a sample to a lab that has a national reputation? Also, in my case the sample was squashed which lead to poor testing.
  • jeancmici
    jeancmici Member Posts: 665 Member
    #3
    Your experience with different pathology results makes me wonder how many of us might have a similar experience if our tissue was re-examined. Scary!!!

    Did your doctor ever say why she had the first report re-done. I can understand the #3 when #1 and #2 differed.

    Good Luck, Jean
  • elizagain
    elizagain Member Posts: 43
    #4
    jeancmici said:

    Your experience with different pathology results makes me wonder how many of us might have a similar experience if our tissue was re-examined. Scary!!!

    Did your doctor ever say why she had the first report re-done. I can understand the #3 when #1 and #2 differed.

    Good Luck, Jean

    I hate to say this, but I know she wants me to have chemo. I am wondering why, as each test comes out, that they point to my HAVING to do chemo. At first, it seemed as if I had a choice, since I am post menopausal, node negative, and the tumor was 2cm. Now, I have no choice, and she's told me to stop the Arimedex. This means if I don't do the chemo, I have no other treatments available for adjuveant therapy. She is at a VERY reputable NCI center. It's very scary indeed.
  • chessie
    chessie Member Posts: 40
    #5
    Maybe because you are Her2+ they want to give you chemo (Herceptin) since the presence of Her2 can suggest a more aggressive approach to treatment. Talk to your doc at length about your options. I am weakly ER+ and strongly PR+. I will start on Tamoxifen next week. Hang in there.
  • SusanAnne
    SusanAnne Member Posts: 245
    #6
    Hi elizagain. Is it possible that you had more than one type of cancer that made up your tumor? I know that my path report showed that I had two totally different cancers. Perhaps each of your reports was done on different sections. If that's the case, then I would take the most positive results from each; ER 19%, PR 75% and of course Her2 positive. I am ER neg, but PR pos and am on Arimidex so I don't know why they want to take you off. Also, I'm sure they want to give you chemo since you are HER2 positive, I am too. HER2 positive cancers tend to respond to chemo well. My suggestion would be to do it, but then again, I tend to be aggressive in my approach. Do what feels right to you after gathering all your information and talking extensively with your doctors. I say doctors because you should also get a second opinion, especially since you are so unsure. Good luck to you.
    Susan
  • elizagain
    elizagain Member Posts: 43
    #7
    SusanAnne said:

    Hi elizagain. Is it possible that you had more than one type of cancer that made up your tumor? I know that my path report showed that I had two totally different cancers. Perhaps each of your reports was done on different sections. If that's the case, then I would take the most positive results from each; ER 19%, PR 75% and of course Her2 positive. I am ER neg, but PR pos and am on Arimidex so I don't know why they want to take you off. Also, I'm sure they want to give you chemo since you are HER2 positive, I am too. HER2 positive cancers tend to respond to chemo well. My suggestion would be to do it, but then again, I tend to be aggressive in my approach. Do what feels right to you after gathering all your information and talking extensively with your doctors. I say doctors because you should also get a second opinion, especially since you are so unsure. Good luck to you.
    Susan

    HOwdie, yes, that would be my approach, but the problem with the chemo is that in post menopausal women, it is not nearly as effective as the femara. The net benefit in my case could be as little as 1%, and the max would be around 4%. Since I've done chemo before, and I know what it did to me last time, I am hesistant to do it again, knowing the side effects and long lasting effects.
  • SusanAnne
    SusanAnne Member Posts: 245
    #8
    elizagain said:

    HOwdie, yes, that would be my approach, but the problem with the chemo is that in post menopausal women, it is not nearly as effective as the femara. The net benefit in my case could be as little as 1%, and the max would be around 4%. Since I've done chemo before, and I know what it did to me last time, I am hesistant to do it again, knowing the side effects and long lasting effects.

    Have you done Herceptin? Maybe if you choose to not have chemo your doctor would consider that if you have a healthy heart. Just a thought.
    Susan
  • elizagain
    elizagain Member Posts: 43
    #9
    SusanAnne said:

    Have you done Herceptin? Maybe if you choose to not have chemo your doctor would consider that if you have a healthy heart. Just a thought.
    Susan

    WEll, I asked her about that. She says they only do herceptin for people with metastatic disease. I don't understand why they are willing to do chemo on node negative women, but not herceptin.
  • SusanAnne
    SusanAnne Member Posts: 245
    #10
    elizagain said:

    WEll, I asked her about that. She says they only do herceptin for people with metastatic disease. I don't understand why they are willing to do chemo on node negative women, but not herceptin.

    Herceptin is not FDA approved yet for earlier stages. If your oncologist will not give it to you and that is what you want, there are oncologists out there who will prescribe it "off label". I've been told this is perfectly legal by my own oncologist. You just have to shop around for another doctor if yours won't do it. I guess it's a decision you have to make as to how you want to proceed. Please don't feel pressured by the doctors into a treatment. Ask for their opinions and for information and you make the choice. That way you will feel better about complying with what you need to do. Please let me know how it goes.
    Susan
  • elizagain
    elizagain Member Posts: 43
    #11
    SusanAnne said:

    Herceptin is not FDA approved yet for earlier stages. If your oncologist will not give it to you and that is what you want, there are oncologists out there who will prescribe it "off label". I've been told this is perfectly legal by my own oncologist. You just have to shop around for another doctor if yours won't do it. I guess it's a decision you have to make as to how you want to proceed. Please don't feel pressured by the doctors into a treatment. Ask for their opinions and for information and you make the choice. That way you will feel better about complying with what you need to do. Please let me know how it goes.
    Susan

    I think I will ask her about that. She did explain the discrepancy, and I think it is important that people know what happened. Unfortunately, I don't know how to get this info out to people becuase who else is going to read this information but us? Anyway, it turns out that it is common practice to include in a path test the DCIS as well as the actual tumor. In my case, it was the DCIS that was showing the hormonal receptors. When they just did the tumor itself, it was hormone receptor negative. They did this one very carefully and are certain that it is correct.

Discussion Boards