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PET scan yesterday, worried

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LI77
LI77 Member Posts: 68

I'm still waiting on HER2 results, and I had a PET scan yesterday. The results are not in mychart but my MO's office said they're available and that the doctor will discuss the results with me at my appointment on Friday. I messaged the nurse to ask if the doctor can call me with the results or if I can be seen sooner but she hasn't responded yet. This is giving me so much anxiety. If the scan was clear, wouldn't they have told me/made it available on mychart

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  • ctmbsikia
    ctmbsikia Member Posts: 758
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    I really hope they call you with results soon. If you are in the US the results are suppose to go directly to your portal once available. Waiting is the worst! Sorry you're waiting!!

  • moth
    moth Member Posts: 3,293
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    yes. They're not supposed to withhold results. They should be posted to the portal as soon as the radiologist filed the report

  • LI77
    LI77 Member Posts: 68
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    I just talked to the nurse. She said the doctor’s policy is to not give results over the phone. She also said that they just got the results and that it can take 1-2 days before it posts on mychart. They rescheduled me for tomorrow morning. The anxiety is killing me.

  • wondering44
    wondering44 Member Posts: 261
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    By law in the US, the results are supposed to go to your chart as soon as results are done. You should receive them before the doctor has time to get to it to review.


  • LI77
    LI77 Member Posts: 68
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    I had the PET at the hospital that my doctor is affiliated with. Her office is at the hospital. I assume that’s why she got results before it posted to mychart.

  • alicebastable
    alicebastable Member Posts: 1,945
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    That shouldn't make any difference. The results are YOURS, not the doctor's. My test results always get posted right away, even if my follow-up appointment is right after the scan - I read them in the car (passenger!) before going in so I can formulate any questions I might have. Call the hospital to find out why they're not posted, and if they give you any runaround about the doctor's preference, remind them it's the law. And tell your doctor's office that, too. Good luck.

  • moth
    moth Member Posts: 3,293
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    doctor's policy is not in line with the legal requirements. You can literally go and demand to get a copy right now. (And they'd still be in violation because the requirement is a portable eclectronic copy so making you go get a printout is not in line with their legal obligation). This record is YOURS. Nobody has the right to delay you getting it

  • 2019whatayear
    2019whatayear Member Posts: 468
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    It's is really terrible that they are causing you extra anxiety around this result. It really ticks me off that this has happened. As you see they are not in compliance with the law that allows you to have access to all your results as soon as they are available. Terrible gatekeeping.

  • threetree
    threetree Member Posts: 1,437
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    So sorry about this, and I agree with all the others above. The lab should have posted your results to MyChart as soon as they were ready. The doctor may or may not have managed to see them first, but it is not the doctor who gives you the results, it is the system, and they are indeed, yours. It is the law and this place does not seem to be in compliance. Shame on them.

    Good luck and I'm sorry you've had to go through this.

  • jhl
    jhl Member Posts: 174
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    LI77,

    The federal law these posters are referring to was implemented less than a year ago: https://www.opennotes.org/onc-federal-rule/

    This law does indeed allow you access to the narrative of the radiologist who read your PET scan. Have you checked your online patient portal? Most health systems should have this in place since the fines are so high when they don't comply. However, I will add a caveat. Sometimes, a pathologist or radiologist will call the provider (could be MO, SO or ED) with a result when it is in the 'rough' form. This would be when he/she has not yet written a narrative. I know the pathologists in my system (Kaiser CA) will often call the surgeon with a result but the actual dictated narrative might take a day or two.

    In any event, I wish you well. I do know the anxiety of waiting for a PET scan result.

    Jane

  • minustwo
    minustwo Member Posts: 13,162
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    L177 - I read on your other thread that your results are in & you are HER2 negative. Hope the rest of the way is smooth. Truly - once you have a plan in place it gets easier. Assuming you'll continue to post on your other thread now that you have test results.

  • LI77
    LI77 Member Posts: 68
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    It’s bad. Multiple spots on my pelvis and lower spine. I’m still trying to process this. So I’m stage 4. I’m 44 and I have an almost 10 year old. This is surreal.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Oh LI77, I am so sorry to read this. Sending you love and strength

  • B-A-P
    B-A-P Member Posts: 409
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    Sorry to hear Ll77. Try not to panic if you can . I know how truly overwhelming it can me. I was dx'd de novo almost 4 years ago and it's never something you want to hear. Treatments have come a long way and can help shrink or reduce the mets. Once you have a tx plan in place, things will feel a little better. The unknown is the worst part.

    Take it easy and give your self time to process <3

  • wondering44
    wondering44 Member Posts: 261
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    Ll77,

    I am sorry to see your results. I can't imagine what you are going through right now.

    I am glad you are on these boards. I know there are many great and experienced women here who can provide you insight and support during this huge challenge you have today.

    Sending many warm thoughts and hugs to you and your family.

  • threetree
    threetree Member Posts: 1,437
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    So very, very sorry to hear this. As someone else above said, take some real good time to just process. I see a lot of reason on these boards for you to have a lot of hope. Sending a hug.

  • moth
    moth Member Posts: 3,293
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    LI77, so sorry to read your news. Come to the stage 4 forums. We've got you. We've got the Kleenex, the cookies, the real talk, the treatments, the clinical trials.

    It sucks. You're not alone

  • sunnidays
    sunnidays Member Posts: 161
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    https://www.quora.com/Can-you-live-20-years-with-m...

    I am so sorry this has happened to you.

  • moderators
    moderators Posts: 8,232
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    Dear LI77,

    We are so sorry that you received this news this morning. We are here for you and we know that everyone else is as well. There is tons of support to be had in the stage 4 forum and a number of weekly zoom groups for those with stage 4 breast cancer. Here are some links about Talking to Children and Talking to Young Children. For now just breathe and know that all of this information and all of our support is here when you need it

    The MOds.

  • serendipity09
    serendipity09 Member Posts: 769
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    LI77 - so sorry to read about your results. None of this easy. You have a lot of support here.

  • ctmbsikia
    ctmbsikia Member Posts: 758
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    Sorry. Heart

  • alicebastable
    alicebastable Member Posts: 1,945
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    I'm sorry about your test results, and I'm sending you a virtual hug. (( ))

  • sondraf
    sondraf Member Posts: 1,618
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    LI77 - I echo the other Stage IV de novo ladies - we got you on this. When ready feel free to come join us, but there are certainly plenty of reasons to feel optimism and hope. I know it doesn't feel like it now, but give it time, it'll be ok.

  • SandraDublin
    SandraDublin Member Posts: 16
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    Hi L177, I also just wanted to say I’m so sorry this is happening and thinking of you and you family. I hope you are doing ok and are getting support you need to move forward when you’re ready, I’m sure this community will also be a grea help. Sending you hugs and best wishes.