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Test result scavenger hunt

beginagain22
beginagain22 Member Posts: 100
edited March 2022 in Just Diagnosed

Hi All,

I have some questions. I was recently diagnosed with IDC and will have a lumpectomy on 03/18. I have been reading a lot on this site and have been very appreciative of the wealth of information. I have noticed tho that most people are referring to test results and have seen discussion about them being in their charts online. I have a GP, haven’t needed her much in the past as I have been healthy until this little hiccup. After the mammogram, the diagnostic mammogram and the US. She sent me to another local clinic to have an US guided biopsy. My clinic and the referred clinic both have online patient portals. Both note that a biopsy was done but no results. I waited about a week and called my GP and spoke with the nurse who said she would check on that. The GP called back in a couple of hours and let me know it was IDC and small, caught it early, grade 3. She said her office would be calling once they set up appointments with a breast surgeon and an MO. They called, I went to the BS and she gave me the HR results. She took blood for genetic testing, talked about my options and said her office would call with an appointment to see their PS. I saw the MO, she took some blood, and made a follow up to see me after lumpectomy on 04/05. Potassium was low and MO advised some dietary changes. I have patient portals set up for my GP, the clinic that did the biopsy, the surgeon, the MO and the surgery center. The surgery center was also where the BS sent me for MRI- all looked good. Can’t see that result either, advised by phone. None of these online patient portals show any test results. I have not seen my biopsy results with my own eyes yet. I have not seen blood test results and I am assuming we are still waiting for genetic tests to come back but I have little faith I will see those results either. Do you all have to go to the patient portals for all of the different doctors to get results? How long before results are listed? Did you have to do anything special to be able to see your results? Sorry this is so long, I wanted you to see what I had done so that I could ask if anyone can see their results for similar tests. Wondering if there is one stop shopping and if I am doing something wrong. Thanks in advance!

Comments

  • quietgirl
    quietgirl Member Posts: 165

    do you know what the name of the online portal they are using is. If you do then someone might be able to tell you where to look. My doctors use mychart. When a new test result is posted I get a notification and on the main screen there is a section labeled tests. Tests are also listed in the main menu under the sub title of reports. My husband's doctor uses a different portal which isn't set up the same but also has either a results or tests section when he gets routine blood work. The results are probably in there we just need to figure out how to help you find the

  • beginagain22
    beginagain22 Member Posts: 100

    Hi quiet girl,

    One is Healow, another is Follow my Health and then there is intellichart. I can see where to go for results but it lists none or in the case of the biopsy it shows it was done and I can see my GPS notes that state IDC Nottingham Grade 3 and that she called me to advise and then notes about upcoming referrals. The details of the biopsy are not there tho. I have read on BCO that online charting is supposed to be done now but is that just to detail what was done or are the actual test results supposed to be listed

  • beginagain22
    beginagain22 Member Posts: 100

    Quiet Girl,


    I forgot to say thank you for responding!! I work in technology so I am experienced with navigating apps and various software programs. It’s just not there. Who is responsible for listing these? Is it the GP or whichever office did the testing?

  • quietgirl
    quietgirl Member Posts: 165

    “On April 5, 2021, the 21st Century Cures Act began requiring healthcare providers to give patients access to all health information without delay“. I’m only quoting that because that is why some of us actually see things before or at the same time as our doctors but it’s all about who loads the information into the portals and I think they might still have 30 days to upload them. But yes you are suppose to have all the information and the actual reports. But everything might not be there at once, so you might see biopsy is done and then that report is updated late

  • beginagain22
    beginagain22 Member Posts: 100

    thank you quiet girl. Maybe I just need to be more patient

  • quietgirl
    quietgirl Member Posts: 165

    oh I'm not sure you need to be have more patiences. I think that it's perfectly acceptable to call/send a message to whoever did the biopsy and say you are having difficulty seeing your results online and what you need to do. If doctors have access to it, then you know the information is out there. You are not asking to see some report that might not be complete

    Hang in there. I know reading it yourself doesn't change it but most certainly understand completely how it can help.

  • LivinLife
    LivinLife Member Posts: 301

    I actually wouldn't be more patient getting those reports. I/ve actually experienced such things, including a recent progress note on occasion, never being put in the portal. I'm willing to wait no longer than a week these days for test results (a few weeks for progress notes) due to these things. I keep original copies of everything b/c docs have missed so many medical issues over time. When a test report is not in the portal within 4-5 business days I contact medical records, then complete and return the Release of Information for that item and wait for it to arrive via the method I chose to have it sent. I've been known on rare occasion to ask another doc to print out such a test result... depends on whether or not I have such an appointment and the relationship you have with your docs - some I wouldn't even ask. My neurologist is the one who was willing to print out my breast MRI because days and days past and it still wasn't in the portal....

  • beginagain22
    beginagain22 Member Posts: 100

    Thank you both for your responses! So, the biopsy should be posted by the radiologist at the clinic I was referred to? I know a copy was sent to my GP and the surgeon but if I am understanding correctly, their portals would not list that. I worry that being sent to so many different medical establishments that are not affiliated could hurt my coordination of care. I feel like I need to gather all this info so that it is in one place. Too bad they can’t all just pick a platform and use it

  • wondering44
    wondering44 Member Posts: 247

    beginagain22,

    If you have the MyChart portal, you should have immediate access to all results once released. You should have access to read the results before the doctor has time to read the results. It is a law in the U.S.

    You can gain access to all images and medical records through a Release. It is a little bit of work, but I keep a file folder with all records and imaging disks to carry with me. I found this easier than expecting my chart to be adequately reviewed before an appointment.

  • quietgirl
    quietgirl Member Posts: 165

    beginagain22—yes I know it is supper annoying you don’t have interconnected access (a lot of people don’t realize how many different medical portals are out there until they find out their doctors are using different ones). I like to remember that doctors and surgeons were exchanging medical records before electronic portals were around so for the most part they are still getting the same information just thru a different process. It stinks the results aren’t there but you know they exist and you have a right to them so ask (even if you decide to just ask your GP or the breast surgeon). I have printouts from various doctors even though half of them work in the same building and all my results so far have shown up online (except the latest appointment

  • beginagain22
    beginagain22 Member Posts: 100

    Thanks for the info. I am just going to ask for it. What a PITA

  • tntnsd
    tntnsd Member Posts: 124

    Hi Beginagain22,

    Usually the results available for us to see as soon as the ordering/in-charged doctor review and sign off, this is my understanding. I recalled my PCP told me that for any tests she ordered for me, she would release to me as soon as it reached her or her office in case she is not available. Same with my breast surgeon, she released the final pathology report right after she reviewed it and have her nurse to call me let me know the result on the phone. At that moment, it is not yet on my portal yet, but about 10 minutes later, it is there for me to view. You might want to call your PCP or the clinic to ask them whether to release as soon as possible for you, it might just be process they have in place for doctor yo review and release.

  • alicebastable
    alicebastable Member Posts: 1,934

    tntnsd, my understanding is that the ordering doctor has no say in releasing the results. It's supposed to be posted to whatever portal that lab or imaging center uses, available to the doctor and patient. If your doctor has it, you should have it available to you at the same time. Even when I get CT scans and have a doctor's appointment immediately after, I read the results in the parking garage before seeing the doctor so I can get my list of questions ready.

  • rah2464
    rah2464 Member Posts: 1,192

    Tntnsd you may have to go "old school" for a bit and request paper copies of your biopsy and marker test results. What a shame to add this extra step when you are already dealing with a health issue. I always found it reassuring to read these myself however I have not had any issue accessing data in the various portals my doctors use (my chart is one of them) Best of luck getting this resolved