Onctotype - Dr has had results for a week

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ziggzmom
ziggzmom Member Posts: 20

Hi all ~ I just am wanting to know if this is normal, as I have read several times about people getting their Oncotype results prior to visiting their dr. I found out today from Genomic Health that the results were relayed to my oncologist on the 10th. My dr office says the results will be given at my next appointment (20th), This, of course, immediately makes me think they are bad/high. Thoughts??? Patience is not my virtue and knowing they have been in for a week is really frustrating to me.

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2020

    "This, of course, immediately makes me think they are bad/high"

    Not necessarily. Some doctors like to control the information and control the narrative. They think that patients may not know how to correctly interpret the data (which of course is sometimes true) so they refuse to let the patient receive any information except directly from them.

    I don't know if this explains your situation, but it is often what happens. It's not right, of course. The Oncotype score is your information about your cancer and you have every right to receive the info as soon as it is available.

    You could call the doctor's office again and tell them that you've decided to come in to pick up a hard copy of the Oncotype patient's report, so that you have time to review the information provided by Genomic Health about your score, and can prepare your questions in advance of the meeting on the 20th. Do the presumptive close, i.e. tell them how it's going to happen and force them to either agree or explain why this isn't possible.

  • ziggzmom
    ziggzmom Member Posts: 20
    edited February 2020

    Thank you, Beesie, for this! I am sure you are correct about the information flow and I so appreciate your thoughts on picking up the copy of the report. You have made me feel both better and empowered!

  • bella2013
    bella2013 Member Posts: 489
    edited February 2020

    Ziggsmom, my nurse navigator was able to get my Oncotype Score for me

  • Lucy55
    Lucy55 Member Posts: 3,044
    edited February 2020

    I love Bessie's advice ...that's what I'd do !!!

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited February 2020

    I didn't receive the results of my Oncotype until weeks after my doctor's office received it. It was just an oversight. I'd call and ask.

  • gb2115
    gb2115 Member Posts: 1,894
    edited February 2020

    Working in a medical setting, I would say definitely don't assume the worst. They probably just want to tell you in person. If they call and tell you the Oncotype score without being able to explain and interpret, honestly, that would be bad practice. A nurse navigator or nurse calling to explain it to you would be sufficient. But if you have an appointment scheduled to see the doctor, it makes sense for them to wait. But I can tell you that in general, placing medical information with no explanation or context into the hands of a patient often does not go very well and I think does mental harm. We have patients who get direct access to lab work, and over the weekend access it, Google results to try to understand, and then worry themselves to death before we even have a chance to look at it and reach out. And it's usually something that didn't need to be worried about.

  • Tmh0921
    Tmh0921 Member Posts: 714
    edited February 2020

    My oncologist called me herself with my Oncotype results. Mine were higher than expected, which meant that she was recommending chemo whereas before she wasn't.

    Most doctors want to discuss these things in person simply so that they can go over it in detail with you and what it means for you. They can also answer questions and have a dialogue with you. If you get the results outside of talking to your doctor and then have a lot of questions/anxiety about them you then have to wait to talk to the doctor (unless you can have your doctor call you outside of your visit).

    I tend to be one that pushes to get my results ASAP before seeing the doctor. I have, however, been extremely lucky in my physicians. My pathology report from my breast biopsy came in on a Friday afternoon when my surgeon was in surgery all day. I called his nurse, and he came into the office after hours when surgeries were done to review it and called me that night. When my Oncotype results came in, I was several weeks away from my next Oncologist visit, she called me with the results and talked to me about her recommendation for chemo over the phone as well as answered questions.

    Just remember that getting the results, without being able to have that dialogue with your doctor may cause more worries.

    Tracy

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2020

    Beesie nailed it. It's going to be hard for the office staff to refuse to give you YOUR results when you're standing right there.

    If the doctor wants to control the narrative, no problem...let him/her control it as soon as the results are available. Making the patient wait until it's convenient for the physician is cruel and thoughtless.

    In my experience, though, when it's bad news it's delivered pretty quickly. It seems to be OK to wait to deliver good news. Not a hard and fast rule, just an observation.

  • ziggzmom
    ziggzmom Member Posts: 20
    edited February 2020

    Thank you, all of you, for your comments. I agree that there is information a doctor wants to provide to you directly to make sure you have the correct information and background; however, I also agree/feel that it should be done in a timely manner.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2020

    Ditto Beesie's response. It is exactly what I would do. You paid for (or your insurance did) those onco. results, and they are yours, and about your condition. I've made this point so many times over the past years I've been a member here, but our doctors and medical personnel work for US, not the other way around. In fact, we've hired them to care for us, just as we would hire a contractor to build a house to our specifications. We choose, we pay, and they can recommend why a particular choice in that home design won't work or can't work, but ultimately we are in charge.

    Good luck; I hope your doc isn't assuming you wouldn't know how to interpret results of your own test, which feels a bit paternalistic--but I'm probably over-thinking it :)

    C

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2020

    What she said! Although I've never had an issue getting results, I know many have, and it's infuriating.

    I did have a hospital registration department demand that I drive 40 miles round trip to sign some paperwork a week before surgery that could just as easily be signed the morning of the procedure. I said NO. My document-signing hand will work just fine the morning of surgery, thank you, and I don't need to unnecessarily inconvenience myself and take time off work to accommodate the registration department.

    A bit off-topic but I'm on a roll.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited February 2020
    My oncologist called me with the results and I really appreciated it. I still remember exactly where I was standing in my house and how elated I felt to a get a low score. I did not even know that not having chemo was an option, since I had seen my sister go through many chemos after being diagnosed in 2004.
  • ziggzmom
    ziggzmom Member Posts: 20
    edited February 2020

    Appointment was today and I explained my frustrations to her and we had a good talk about the need to communicate this information. And what happened. All in all it was a good talk. AND GOOD NEWS...no chemo. Getting radiation set up!

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited February 2020

    glad you got good news !

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2020

    That's awesome! Compared to 5 months of chemo, rads were so easy.

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited February 2020

    Ziggzmom - great news!

    During my last visit with my Oncologist, I wanted to discuss about my Oncotype report and she did not have a copy on file - just the number. I felt that was very strange. I have a copy and plan to make a copy and give it to her. But I am feeling maybe she is not a good doctor. Please advise

  • ziggzmom
    ziggzmom Member Posts: 20
    edited February 2020

    Nonomimi5 - That seems strange to me, too. My oncologist gave me a copy of a full report and went through each section. I would ask her directly for a copy.

    Thank you, all, for your kind words and well wishes on the good news! First radiation meeting is tomorrow afternoon (2/25)!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2020

    Nonomimi5, I'm a firm believer in intuition. Maybe she has an online copy but didn't make a paper copy to share with you, which could be clumsy, but not a deal-breaker-yet.

    Claire in AZ

  • ziggzmom
    ziggzmom Member Posts: 20
    edited February 2020

    claireinaz ~ I kind of wish we had a "like" button :) I agree completely with your response.

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited February 2020

    Claire and ziggzmom, thank you for your advice. Ziggzmom - I hope your radiation meeting went well. Rads are manageable. Good luc

  • scoop
    scoop Member Posts: 34
    edited March 2020

    ziggzmom, congrats!


    I had my BMX Feb 11 and have been waiting on oncotype since then. After a phone call to Genomic Health, doc's office now says results anticipated 3/10. So basically a month long wait. Extremely frustrating. They are also hedging hard when I ask them to call me with results as soon as they have them. They prefer to set an appointment for the next day to tell me in person. When I pushed, the nurse said she'd need to ask the doctor. Grr.



    Oh, and I also still have my drains in. I'm losing my mind.

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited March 2020

    Scoop - I am so sorry for the long wait. Hang in there. I don't remember how long I had to wait. I got all my scores and information about lab reports at my first follow upmeeting with my surgeon after the surgery.

  • ziggzmom
    ziggzmom Member Posts: 20
    edited March 2020

    I'm so sorry you are experiencing this long wait and the push back in getting your results! I suggest talking to your dr. I felt so much better after I talked to mine and we had a good conversation about why I was upset. Be firm, but make sure you emphasize this your health and your information. Best of luck to you! Keep us posted!

  • scoop
    scoop Member Posts: 34
    edited March 2020

    Thank you ziggzmom!


    After all that complaining, yesterday I got my drains pulled (thank goodness), and then today the oncotype test randomly came in! And it was a 12! No chemo for me!


    I am so relieved. Ready to start tamoxifen and recovery in earnest! Thank you to everyone here for the support and information.

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited March 2020

    That’s great news. Thank you for following up

  • ziggzmom
    ziggzmom Member Posts: 20
    edited March 2020

    Scoop ~ that's the kind of information I love seeing right away in the morning! Great news!!!

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