PET waiting for results

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tangandchris
tangandchris Member Posts: 1,855
edited May 2021 in Not Diagnosed With a Recurrence or Metastases but Concerned

I had a PET yesterday and am now waiting for results. My MO is out next week an the earliest I can see him is 10/28. It feels like I'm being highjacked to be honest. I spent the morning ranting with DH over this. MO won't give results over the phone or let another MO do it.

I emailed his nurse and asked about switching to a different dr. She suggested I needed to take a breath and wait. She will ask MO if she can give me results over the phone when he is out.

Next thing will be biopsy and the waiting for that. Its just brutal.

Im venting. But this wait is long right??

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited October 2020

    Sorry you are going through this. Do you have ability to see your tests online yourself and results or are they sent directly to your doctor? It may help give you info before you go if you can see them.

    I know waiting is awful! Best wishes.

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

    Expecting you to wait for 2 weeks is not okay in my opinion. Your oncologist should have another oncologist covering their patients while they are out, right?

    Waiting 2 weeks for results and then possibly needing a biopsy after that appointment? I hope the nurse has a better solution. My experience is that I don't get the test results online until the ordering Doctor has approved it or given me the results.

    So sorry about this -waiting awful.

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  • moth
    moth Member Posts: 4,800
    edited October 2020

    Have you checked whether you can access your medical records at this clinic/cancer center where you had the PET? The radiologist will write a report and you should be able to get that, even if you have to go in person to pick it up rather than seeing it in an online portal. The MO is not a gatekeeper for the radiology report though obviously the MO will want to discuss how they want to proceed based on what the RO writes.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2020

    I contacted the center where i had the PET about getting the report. I was told they would have to discuss with the doctor before releasing to me. I've never had this issue when getting reports from the hospital.

    I'm very frustrated. I feel highjacked by this and that I am at the mercy of this doctor's whims.

    Maybe this is more typical than my experience the first time around. I had my mammogram and biopsy and dx'd within 2 weeks.

    I mean what are my rights??

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  • moth
    moth Member Posts: 4,800
    edited October 2020

    Are you in the US? HIPAA says patients have legal right to a copy of their medical records.

    I'm in BC Canada and have gotten copies of medical records, including radiology reports myself.

    Do you have a GP and by any chance were they copied on the results? That's the other workaround - if you can get the GP to see the report and discuss it with you. It's sometimes faster than getting a copy of the report from a clinic yourself

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2020

    tang - you can go to the facility where you had the MRI done and printed copy of the results and a CD of the actual 'films'. In my experience, it's pretty standard that tests are not released on My Chart or a Portal until the doc who ordered them has released them. But I agree - just because your MO is going on vacation, someone will be "on call" for his patients. Maybe the nurse can hook you up with that doc. So sorry for the frustration.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2020

    I heard from the nurse earlier and she sent me the report. Also I'm set with a thoracic surgeon next week to discuss biopsy options.

    *sigh*

    Good news is the PET shows pretty much what we thought. Just more nodes lit up and the nodules on my lungs as well.

    Trying to hold tight to car on this rollercoaster.

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

    Tangandchris - I am so relieved that the nurse gave you the report! it's good news that the PET didn't show additional concern. Also good to get the appt with the surgeon to discuss biopsy options. Hold tight. The biopsy will tell you what you need to know and you will get a plan soon. We're here for you!

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

    I’m glad you got the results . I was truly having sympathetic anxiety at the thought of anyone waiting Nearly 2 weeks for a PET scan result . Completely unneces

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2020

    Thank you for the support.....I love the love here.

    I received flowers from a book club that DH is a part of online. They are total strangers but took the time to send me hope and love. Makes me feel overwhelmed with gratitude.

    I don't know why any of us are dealt this awful hand of breast cancer. I've felt a lot of fear and sadness these last several days. Yesterday afternoon though I felt angry. Anger at the treatment I suffered thru and yet here I am anyway. Anger that my family will likely not have around like we had always planned.

    I'm gonna try to take a gratitude approach today. The flowers help.

    Love to all of you.

    image

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

    So thoughtful for your husband's online book club to send you flowers! I also appreciate the support on here- we all understand the anger but also the choice to find and embrace gratitude .

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  • Cinderella57
    Cinderella57 Member Posts: 12
    edited May 2021

    I had an MRI Thursday. Its Saturday and results have been posted to an app I have. There is a red exclamation mark by this test. Scared to open it and look. Not sure looking at tests prior to talking to doc is good idea but I am so scared right now.

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  • L8Blmr
    L8Blmr Member Posts: 133
    edited May 2021

    Cinderella, if it was me, I would open it. Knowledge is power. You are stressing yourself out by not opening it. It might not be as bad as you're imagining. And if the news is not so favorable, you have time to educate yourself before meeting with MO. Best of luck and prayers for good news.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited May 2021

    I get those red exclamation marks if it's something like the lab changing the range slightly for a blood test result, as a heads up that the medical staff should be aware that what is considered normal is now different. Sometimes it's just to make sure whatever was posted gets read.

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited May 2021

    As Alice said even labs that are just a tad off will have the exclamation point... I just had a BUN and a few other labs just a few points off and each had an exclamation point near it. Soooo likely there is something outside of totally normal though doesn't mean something really bad either. Don't know if you opened this or not yet... the fact you've seen the exclamation point will likely heighten your anxiety if you haven't opened it yet. You could have a trusted person with you when you open it if that would help - support right there if you need it then.... Obviously you can wait as well....

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