Is this Wait Normal?

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BLMike
BLMike Member Posts: 219
edited May 2019 in Waiting for Test Results

The ER found nodules on my wife's lungs a week ago Saturday (11 days ago). The hospital oncologist said he was going to try and get a lung biopsy and body scan done a week ago Monday (8 days ago). This didn't happen, and she wasn't scheduled to see her normal oncologist about these nodules until last Friday (6 days after the nodules were found). Given that she's had breast cancer twice before, her oncologist put the odds of this being Stage 4 at approximately 70%. Given that, it seems to me that we need some urgency in determining what these nodules are yet, here we are 11 days after having found them and no tests are yet scheduled. My wife called her oncologist office on Monday and they said they were "trying" to get the lung biopsy approved by her insurance company and scheduled (she does have really good insurance FWIW). She has a follow-up scheduled with the oncologist for May 17 (a month after the nodules were found).

Things seems to be moving at a glacial pace with no sense of urgency what-so-ever by anyone. I just feel like from a diagnostic perspective, we've totally wasted the last 11 days and there are still no tests yet scheduled. I know I'm impatient (and scared), but is this all normal? Thanks in advance.

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  • KellyMSM
    KellyMSM Member Posts: 15
    edited May 2019

    I am so sorry that you are both going through this and I wanted to let you know you are both in my prayers. I can only tell you that when they found spots on my dad's lung xray by accident, it took 3 months to get the actual diagnosis of lung cancer, and I felt then, and still feel now, that it was entirely too long. By DX he was Stage III. We'll never know how much it grew in those three months, but if the biopsy had been immediately, we wouldn't have to wonder. He was successfully treated and lived another 13 wonderful years cancer free and I am grateful for that. My only thoughts would be to say the hell with the insurance, tell them you'll self pay if insurance doesn't cover, and get an appointment ASAP. It seems callous and irresponsible for them to make you wait so long. Best wishes to you. 

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  • BLMike
    BLMike Member Posts: 219
    edited May 2019

    Kelly -- I'm so sorry both you and your father had to go through this terrible disease. It definitely helps those of us confused about what's going on to hear from those who, unfortunately, have gone before us. Your father's story (although frustrating) is encouraging to me. Thank you for sharing it. Your suggestion about getting an appointment ASAP by offering to self-pay is a good one. We'll try that today. Thanks again. The waiting with no progress (and no progress even scheduled) is indeed excrutiating.

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  • BLMike
    BLMike Member Posts: 219
    edited May 2019

    OK. Here we are on the two week anniversary of finding these nodules in my wife's lungs. Although nothing's been done to determine what they are and whether they are cancer or not, we, at least, have a whole body bone scan and abdomen/pelvis CAT scan scheduled for my wife on Tuesday. The thinking is that if there are other tumors elsewhere, they want to biopsy all the tumors (in her lungs AND elsewhere) at the same time. This probably makes sense from an efficiency perspective, but meanwhile, these nodules are continuing unimpeded by any treatment in her lungs.

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  • BLMike
    BLMike Member Posts: 219
    edited May 2019

    We got the results of the whole body scan and abdomen/pelvis CAT scan. Thankfully, they were negative for metastatic disease!! That is obviously fantastic news for my wife. Now the only thing we have to worry about are these nodules in her lungs (for which we still don't have a biopsy scheduled). Hopefully that's going to be scheduled today.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited May 2019

    That's great news!

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  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited May 2019

    That's great news.

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  • BLMike
    BLMike Member Posts: 219
    edited May 2019

    Thank everyone for their best wishes. Yes, there's no question it's great news that she has no evidence of metastatic disease anywhere else. We now have the lung biopsy scheduled for May 22. This is over a month after the initial diagnosis. I simply can't understand why this process takes so long. I wish I could hear from other who could confirm (or not) that this type of time-frame is normal. It just seems to me that 4+ weeks to biopsy lung nodules that have a 70% probability of being cancerous (per the oncologist) is an incredibly long time. Meanwhile, the nodules are not being treated in any way what-so-ever and if cancerous, are growing unimpeded.

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