Did anyone ever refuse the OncotypeDX test?

CarrWilson
CarrWilson Member Posts: 111
edited March 2014 in Breast Cancer #1
I was reading the history on this board and could only find one other person that refused this test.

I had a right mastectomy 2/9/10. ER/PR+, HER-2 negative, 0/2 Nodes negative. Stage 1, 1.6cm tumor, invasive moderately differentiated ductal carcinoma with extension to margin of specimen (margins not clear), with additional areas of intermediate grade intraductal carcinoma involving subareolar tissues and tissues of inner lower quadrant (DCIS).

I saw my Oncologist today and he recommended chemo, radiation, hormone therapy. He also gave me the option of having the OncotypeDX test, but with the caveat that, "I would have to live by the results of the test", and if the score was low he would do everything in his power to discourage me from having chemo. But he left the option open to me.

I am 49 years old, and in very good health. My thoughts are that I want "everything possible to be done" including chemo. But he said if I was in the low range it would only help me approximately 1% over not having chemo. Am I crazy for not wanting this test? I am afraid if I do have a recurrence I will be older and possibly not in as good of health and not a candidate. If he had recommended against chemo, I think I would have requested the OncotypeDX test. It is my understanding that the TailoRX trial is now closed so that is not an option.

I would appreciate your thoughts and comments.

Thank you so much - Carrie

Comments

  • sparky72156
    sparky72156 Member Posts: 61
    #2
    My question would be "Why
    My question would be "Why did he recommend chemo, and then say that if the oncotest was low, he would recommend NOT doing chemo?" Sounds to me as though he shouldn't be making any recommendations without all the facts available. And why would you have to live by that test? We ALWAYS have the right to decide for ourselves what is the best course of action. Personally, I don't like his attitude. I'd get a second opinion. But that is just me.......I tend to be a bit contrary.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #3
    Me!
    You are NOT crazy, Carrie.

    I was also Stage 1, with very tiny tumors and no lymph node involvement -- and I too wanted to hit this with everything I could, so that I wouldn't have to live with any "what-ifs" years down the road. I know that the Oncotype test does help many women make this decision, but, in my case, I had no intention of NOT doing chemo -- and I refused the Oncotype test when I was given the option.

    I actually saw two oncologists during this part of the decision-making process -- one a breast cancer specialist -- and both said that my "gut feeling" carried a lot of weight with them. Both said that, if my gut was telling me to do chemo, then I should.

    I know Sherria49 here on this board felt similarly to me, and has posted about it before, and there are probably others who will weigh in.

    Traci
  • CarrWilson
    CarrWilson Member Posts: 111
    #4
    TraciInLA said:

    Me!
    You are NOT crazy, Carrie.

    I was also Stage 1, with very tiny tumors and no lymph node involvement -- and I too wanted to hit this with everything I could, so that I wouldn't have to live with any "what-ifs" years down the road. I know that the Oncotype test does help many women make this decision, but, in my case, I had no intention of NOT doing chemo -- and I refused the Oncotype test when I was given the option.

    I actually saw two oncologists during this part of the decision-making process -- one a breast cancer specialist -- and both said that my "gut feeling" carried a lot of weight with them. Both said that, if my gut was telling me to do chemo, then I should.

    I know Sherria49 here on this board felt similarly to me, and has posted about it before, and there are probably others who will weigh in.

    Traci

    Me!
    Thank you Traci, you were the one post I found that was thinking along the same line as I am. I do have an appointment for a second opinion 3/2/10.

    I also have that "gut feeling" about chemo. (I also had a "gut feeling" and complained to the MD for 5 years about a lump in my breast that no one could feel or find on mammo.) I do feel knowledge is power, so I am still a little torn, but I do not have to make a decision for a little while.
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #5
    You're not alone
    Although I did choose to have the Oncotype dx test done (my score ended up in the intermediate range, and I opted to have chemo for the approximately 4% benefit it would give me), I have read posts from others that have chosen to just go ahead with the chemo and forego the test. I, like you, chose the chemo in part because I'm relatively young (just turned 51) and felt that I would be better able to withstand chemo now than I would if I was unlucky enough to have a recurrence later.

    If your oncologist is recommending chemo and it sounds like you'd want chemo regardless of the results of the Oncotype test, then there's really no need to have the test done. The only reason for the test would be to make a decision about whether you want to have chemo (which does come with it's own risks).

    Wishing you the best with your treatments,

    Cindy
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #6
    CarrWilson said:

    Me!
    Thank you Traci, you were the one post I found that was thinking along the same line as I am. I do have an appointment for a second opinion 3/2/10.

    I also have that "gut feeling" about chemo. (I also had a "gut feeling" and complained to the MD for 5 years about a lump in my breast that no one could feel or find on mammo.) I do feel knowledge is power, so I am still a little torn, but I do not have to make a decision for a little while.

    Carrie,
    Your reply reminded me of something that the breast cancer specialist said to me at the end of my appointment with her:

    I saw her just for a one-time consult at the urging of my oncologist, when we were making treatment decisions after my surgery, and we talked at length about whether or not I should do chemo.

    As I was leaving, she said that she believes that sometimes a "gut feeling" about treatment is our body knowing what's going on inside it better than we do, or doctors do, or tests do. I honestly don't know if I believe that or not, but I think it's very interesting to ponder.

    Traci
  • Kiantae
    Kiantae Member Posts: 29
    #7
    Ordered Test, waiting on results
    I decided to do the test on my oncologist's recommendation. It is my understanding that even if the score comes back in the intermediate or high range, it give the oncologist additional information that allows him/her to know more about the tumor to make a more effective treatment plan. In my case I am node-positive so the decision on chemo is even more dicey. I am pretty sure that I will be doing chemo, I just needed as much information as I could get. A lady from "Reach for Recovery" I spoke with about my upcoming decision mentioned that I could have my case discussed by a "tumor board" at my local hospital. That consists of other oncologists, radiologists, surgeons, etc to weigh in on what treatment plan should be considered based on the known pathology. My surgeon offered to present my case for me because of the node-positive status and the potential recommendation of no chemo if my test comes back with a low score. He knows I am strugglling with decisions. I have not heard anything back from that. I think we just need to do as much research as we can and try and make a decision we are comfortable with and can live with. Good luck with your process, I am still working through mine.
  • Cairmaid
    Cairmaid Member Posts: 64
    #8
    Cindy is right
    The only reason to have the test is to help make the decision about chemo, if you are "on the fence." However, I decided NOT to have chemo when the oncologist told me it would only give me another 4%. Surgery & radiation took me to a 75% chance of no recurrence, and Femara gives me another 12.5% So having chemo just to go from 87.5 to 91.5 just didn't sound like something I wanted to do. It wasn't ever going to be 100%

    So, if you have already decided you want to have chemo, why do you need the test? :-)
  • helen e
    helen e Member Posts: 223
    #9
    Expensive test
    I chose to have the test. The testing lab called me to make sure my ins. would cover it because it costs about $4,000. They have a program to help those who can't afford it. I was told that my dr. wouldn't recommend it to me due to my test scores being low (only 14) and me being ER+ and Her2nu neg. but ultimately it would be my choice. It would only increase my chances of recurrence by 2-3% if I had chemo., so he didn't recommend me having it. My hubby and I talked (I am 44) and agreed if it wouldn't increase my chances by 5% or more that I wasn't going to put myself through it and I chose not to do it. I am, however, on Tamoxifen for 5 years.
  • MCJ
    MCJ Member Posts: 59
    #10
    oncotype dx
    Hi Carrie,

    My wife was first diagnosed estrogen pos, 2.4 tumor, after a mestectomy, the pathology report was 15 of 15 nodes clear, with a microscopic bit of cancer in one node, why it was on the report as clear is just the way they call it, we were told, so our oncolgist prescribed a moderate form of chemo, we talked about the oncotype test and he seen no reason to take it, we disagreed, we wanted to know the chance of reoccurance for heredity purposes, we wanted to know, the test came back with a different diagnosis, it said that she was estrogen negative, changed the whole ball game, of coase we were totally confused, the medical field views the oncotype test as trump, I clled the company in case of a miss read, it appears this test is thoroughly examined, not much room for error, we talked with other proffesionals, and settled that she is now a triple neg, that meant more extensive chemo,
    So it turns out that the initial test is not as accurate and it had her as a estrogen pos on the low side, the onco said not so fast,
    so I guess you could say that the test not only lets you know your percntage of reoccurance but gives you a more indepth dx of your tumor,
    not sure on how this info can help, we only feel fortunate that we are now getting the proper treatment, God only knows what would of happened if we did not take the test.
    not an expert by far but sounds like you would not have a heavy dose of chemo to begin with, chemo is not fun but doable,

    good luck any way you go
    jerry
  • CarrWilson
    CarrWilson Member Posts: 111
    #11
    MCJ said:

    oncotype dx
    Hi Carrie,

    My wife was first diagnosed estrogen pos, 2.4 tumor, after a mestectomy, the pathology report was 15 of 15 nodes clear, with a microscopic bit of cancer in one node, why it was on the report as clear is just the way they call it, we were told, so our oncolgist prescribed a moderate form of chemo, we talked about the oncotype test and he seen no reason to take it, we disagreed, we wanted to know the chance of reoccurance for heredity purposes, we wanted to know, the test came back with a different diagnosis, it said that she was estrogen negative, changed the whole ball game, of coase we were totally confused, the medical field views the oncotype test as trump, I clled the company in case of a miss read, it appears this test is thoroughly examined, not much room for error, we talked with other proffesionals, and settled that she is now a triple neg, that meant more extensive chemo,
    So it turns out that the initial test is not as accurate and it had her as a estrogen pos on the low side, the onco said not so fast,
    so I guess you could say that the test not only lets you know your percntage of reoccurance but gives you a more indepth dx of your tumor,
    not sure on how this info can help, we only feel fortunate that we are now getting the proper treatment, God only knows what would of happened if we did not take the test.
    not an expert by far but sounds like you would not have a heavy dose of chemo to begin with, chemo is not fun but doable,

    good luck any way you go
    jerry

    Thanks to everyone
    Thank you to every that took the time to respond. I went to my surgeon today because I had margins that were not clear. He had talked to the pathologist to clarify his report about the margins. They also took my case to the tumor board.

    But, just by chance my plastic surgeon had took the skin area they were concerned about. So YEAH, no more surgery and clear margins. Just because my surgeon was curious (his words), he told the pathologist to sent my specimen for the oncotypeDX test.

    So I guess my dilemma is now a moot point. I hope my insurance covers it. (The MD said it did). Now, more of the waiting game for the results. I know I sounded like I wanted to take the chemo, but I really was still on the fence. Knowledge is power!

    Hugs to everyone - Carrie

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