Oncotype DX Test

Marilyn56
Marilyn56 Member Posts: 3
edited March 2014 in Breast Cancer #1
I was supposed to start radiation on 12/21. I'd had my body mapped and was prepared to start treatment. That morning, I had an appt. with my oncologist who asked if I had the results of the Oncotype DX test? I'd never heard of it. She called my surgeon oncologist (who happens to be her husband). He hadn't requested the test. My radiologist oncologist never mentioned it either. Long story short, she called my radiologist and cancelled the treatments until after she had the test results. She apparently was the person responsible for ordering the test and didn't do so. She blamed her husband. I made an appt. to see him to find out why he'd dropped the ball. He yelled at me and said it wasn't his responsibility. Well, I've learned it takes anywhere from 2-3 weeks to get the results. I had my surgery on Nov. 20. I have stage 1 bc with no lymph node involvement. I'm wondering if there is anyone who can shed some more light on this test and its importance. The oncologist said it will determine if I need chemo in addition to radiation. If she'd ordered the test after my surgery, the results would be here. I'm very upset because it is just delaying any treatment and prolonging getting my life back. I am planning on getting a second opinion from a different oncologist not affiliated with the group of drs. I've been going to. I feel as though the surgeon and the oncologist have dropped the ball and they don't care. Any help?

Comments

  • sallyf
    sallyf Member Posts: 33
    Oncotype testing
    Oh, Marilyn, I'm so sorry to hear about your distress, especially when you want answers and to be able to move on NOW. Oncotype testing is an assessment of your cancer (a small piece is sent to a lab called Genomics) at the gene level. It checks 21 different factors and helps your oncologist decide if chemo is needed, more, less, or none, and what your risk of recurrance is. You could ask her to put a rush on it: mine was analyzed in about 7 days. It's especially helpful in making decisions in node NEGATIVE patients.
    I'm concerned that your surgeon and oncologist are so testy. You need calm, reassuring/supportive and top notch doctors, if at all possible. It never hurts to get a 2nd opinion from another oncologist.
    I'm relieved to hear you are Stage 1. Take a deep breath and take 1 day at a time.
    I will hold you in my heart : )
    Sally F.
  • LadyParvati
    LadyParvati Member Posts: 328
    hmmm . . . you're caught in the middle
    Sounds like that husband and wife might not be getting along so well, and you got caught in the crossfire, Marilyn! Yech! I think the oncologists are the ones who generally think of this test, but they always want to know if the surgeons have run the test . . . sheesh. It's really frustrating, though, isn't it?!

    My oncologist insisted on running the same test even though I'm triple negative, as she wanted to be SURE I'm triple negative (which it showed I am). My surgery was 11/6, so I'm getting pretty impatient about getting chemo started, too, but my oncologist said we're still within the optimal treatment window, which I think she said was 12 weeks.

    The nice thing about Oncotype DX for those who are ER+/PgR+ is that it can give a lot of valuable genetic information about the cancer that can really help the doctors understand it better, which can help improve the treatment you receive by making it specific to you and your cancer. I know it's scary to have your treatment delayed, but if it means that you get a treatment better targeted to your cancer, it will be better for you in the long run.

    It might be reassuring to know that the Genomics people--the ones who run the Oncotype DX--say it only takes 10-14 days to run the test once they receive the tissue sample. They called me themselves and talked with me about it and gave me a phone number so that I could call to check on the progress of my test. I hope they do that for you as well.

    Hope it all goes well--keep us posted! Sandy
  • Marilyn56
    Marilyn56 Member Posts: 3

    hmmm . . . you're caught in the middle
    Sounds like that husband and wife might not be getting along so well, and you got caught in the crossfire, Marilyn! Yech! I think the oncologists are the ones who generally think of this test, but they always want to know if the surgeons have run the test . . . sheesh. It's really frustrating, though, isn't it?!

    My oncologist insisted on running the same test even though I'm triple negative, as she wanted to be SURE I'm triple negative (which it showed I am). My surgery was 11/6, so I'm getting pretty impatient about getting chemo started, too, but my oncologist said we're still within the optimal treatment window, which I think she said was 12 weeks.

    The nice thing about Oncotype DX for those who are ER+/PgR+ is that it can give a lot of valuable genetic information about the cancer that can really help the doctors understand it better, which can help improve the treatment you receive by making it specific to you and your cancer. I know it's scary to have your treatment delayed, but if it means that you get a treatment better targeted to your cancer, it will be better for you in the long run.

    It might be reassuring to know that the Genomics people--the ones who run the Oncotype DX--say it only takes 10-14 days to run the test once they receive the tissue sample. They called me themselves and talked with me about it and gave me a phone number so that I could call to check on the progress of my test. I hope they do that for you as well.

    Hope it all goes well--keep us posted! Sandy

    Oncotype DX
    Thanks for your responses. The company did call me and they sent a letter. I did the research on the test myself because my oncologist didn't explain it. The letter I received from the company said it takes between 10-14 days. When they called, they told me that they work 24/7 including holidays. That was on the 23rd. The oncologist told me that with the holidays, the delay would be greater. I'm just so disgusted with the entire situation. Unfortunately, there isn't anything I can do but wait. I will call the company though. Thanks for that advice.
  • lanie940
    lanie940 Member Posts: 490
    Marilyn56 said:

    Oncotype DX
    Thanks for your responses. The company did call me and they sent a letter. I did the research on the test myself because my oncologist didn't explain it. The letter I received from the company said it takes between 10-14 days. When they called, they told me that they work 24/7 including holidays. That was on the 23rd. The oncologist told me that with the holidays, the delay would be greater. I'm just so disgusted with the entire situation. Unfortunately, there isn't anything I can do but wait. I will call the company though. Thanks for that advice.

    My Medical Oncologist
    My Medical Oncologist ordered the test for me also. I was going to have to have radiation anyway because I had a lumpectomy. It is my understanding you have CHEMO before radiation, that is why your after surgery treatment plan is delayed if you are waiting on results of the Oncotype dx test results. Mine was 21 the higher end of the low end, my Medical oncologist told me with RADS and Arimidex I would have a 13% chance of having a cancer reoccurance within 10 yrs according to the results. so by adding CHEMO it would only lessen it by 2-3% so, I said no to CHEMO. I'm satisfied with my decision.
  • Cher2063
    Cher2063 Member Posts: 12
    Marilyn56 said:

    Oncotype DX
    Thanks for your responses. The company did call me and they sent a letter. I did the research on the test myself because my oncologist didn't explain it. The letter I received from the company said it takes between 10-14 days. When they called, they told me that they work 24/7 including holidays. That was on the 23rd. The oncologist told me that with the holidays, the delay would be greater. I'm just so disgusted with the entire situation. Unfortunately, there isn't anything I can do but wait. I will call the company though. Thanks for that advice.

    Looks like a great time to
    Looks like a great time to switch doctors. They had to run 3 oncotypes before they got the answers they needed for me. What a rotten way to be treated. I'll pray that this doctor who gives you a second opinion is a good fit for you.
    all the best,
    Cher
  • cjhw
    cjhw Member Posts: 3
    test and waiting
    Hi,
    I was just diagnosed with triple negative on the thirtieth. I see my medical oncologist for the first time tommorrow. I don't think I've had that test either. I know I want a second opinion. Is anyone out there from around Pittburg or Wheeling area and do you have any recommendations about an oncologist. I am hearing good stuff about Allegheny. Thanks!!...and good luck. Waiting is tough to do. I will ask tommorrow though about the test!
  • Tinabug
    Tinabug Member Posts: 158
    Oncotype DX
    Hi Marilyn,

    I understand exactly what you are going thru & I feel your pain. I had a bilateral mastectomy on Nov. 23. My 1st appt with my original oncologist was an absolute disaster. My husband & I waited 2 hrs until I became so frustrated we left without seeing him. Because of this wonderful site, I knew about the Oncotype test. So the next day, I called my surgeon to get the results & he told me he had not ordered it, but the oncologist(no longer my dr.) ordered it a few days ago. Needless to say, I was ready to scream...I had to find another oncologist & wait on my Oncotype results. It just seemed as if everyone was dropping the ball. I called the Oncotype company myself & asked if they could get my results sooner & the guy I spoke with did it within 3 days. My surgeon called on Dec 23 & told me I didn't have to have chemo because of Oncotype score was low, but he didn't have the actual score. I was so excited, but wanted to know my actual score. However, when I called to get my results the Oncotype company couldn't give them to me, I had to get them from the oncologist I was no longer using. I went thru the holidays without a definite answer. We met with the new oncologist today only to discover my results weren't faxed to her. I still do not have a treatment plan...it's going to be another 2 weeks. I did push pretty hard & got my Oncotype score(15) from the original onoclogist. I will tell you I am so thankful I changed oncologists...waiting (2) hrs was a blessing in disguise. Make sure you are happy with your care team, it has made a huge difference for me. As far as I am concerned this entire journey is difficult enough without having to deal with rude & inconsiderate doctors. I pray for a low score for you & some consideration from your doctors.

    Sincerely,
    Tina
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    Marilyn
    So sorry you had to go through this!

    A. Whoever is reviewing the final pathology report (I believe this would normally be the oncologist) should be the one to order the Oncotype, if indicated. Because if there is additional lymph node involvement or other issues, they might recommend chemo anyway and don't need the test results to create a treatment plan.

    B. You should not have had to make an appointment with your surgeon just to ask a question.

    C. Your surgeon should NEVER have yelled at you for asking a question!!! This part just makes me furious.

    It sounds like a 2nd and maybe a 3rd opinion is needed, but I did want to tell you not to worry about the time frame. Believe me, I totally understand wanting to get started on treatment and the frustration with having your plan now up in the air, but from a medical standpoint, the waiting will not hurt you. You do still have time to get the results and if chemo is indicated, to get it started.

    I hope you get some better care very soon so that you can get on with the rest of your treatment.

    Please keep us posted on how you're doing.

    Cindy