Insensitive Providers

Veeder14
Veeder14 Member Posts: 880
edited January 2018 in ILC (Invasive Lobular Carcinoma)

I feel like my feelings regarding this diagnosis and fears about treatment etc., are being invalidated. This is extremely stressful and I want to obtain as much information as possible before my app't since I have to wait 1 month on a urgent referral.

Since I don't have a surgeon app't until the end of the month. I want to know my test results before that time. Why wait 3 more weeks!! I was told to contact my primary care doctor (sometimes test results are automatically released to the Patient via hospital's email system) since I'm not officially the surgeon's patient yet. I explained to primary care that some of the biopsy results were back and some were still pending (HER2 test), and could I be notified when the results were in. Primary Care reads that I'm requesting additional testing. Ugh, can't they read??

Primary Care sends my email to the NP to respond to me and her attitude and tone in her response is not very supportive, particularly since she's a Cancer NP. She writes telling me that no more additional tests are needed and I will get the results at my surgeon app't. I'm not asking for additional tests!!! She makes it seem like this is all routine, maybe for the providers but not the patient.

Meanwhile, it seems no one will speak with me about my concerns until the surgeon app't which wouldn't be a big deal if it was just a week away. Thanks to you guys for answering my questions, it is great support.

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Comments

  • Outfield
    Outfield Member Posts: 1,109
    edited January 2018

    Veeder, this makes me crazy. Did you email or message your Primary Care doctor? I find that my phone messages almost always get terribly mangled because the people answering the phone usually have no medical training and don't understand what I'm talking about, AND they aren't dedicated enough to make sure they send my message word-for-word.

    If you do the email or messaging, make it really simple. Short sentences. It's harder for that to get misread.


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  • Veeder14
    Veeder14 Member Posts: 880
    edited January 2018

    Hi Outfield,

    Thanks for your concern. This stuff makes me crazy also! I emailed and called Primary Care. They are the ones that are deferring my concerns to the NP at the Breast Health. The NP wrote the order for the additional tests and they are obligated to give me the test results. However, my app't with the surgeon has been moved up to the 18th next week so he will have the results for me at my app't. From then on, I won't really have to deal with either of those two providers, just the Surgeon and any referrals to other depts. he makes.

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  • Outfield
    Outfield Member Posts: 1,109
    edited January 2018

    I'm glad your appointment got moved up.

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  • Momine
    Momine Member Posts: 7,859
    edited January 2018

    Each health care system has different ways of dealing with this. I was treated in Greece, where the patient gets all test results, then brings them to the doc for evaluation and comments. But even in cases where the results went to the doc first (for example when I was hospitalized), I always got all results as soon as they were in.

    For follow-up testing, I have found the docs to be very sensitive to the anxiety cancer patients go through. Whenever possible they ask me to wait after the test and bust chop to review tests and give me results right then and there. One of those times, I had extreme hip pain, called doc who ordered me to show up ASAP for X-rays. I had to wait 45 minutes for the results, because the radiologist wanted to be absolutely sure she hadn't missed anything. She went over the films several times and also got my onc to take a look. In the end, it was nothing worse than a bit too much weight lifting.

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