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Thread: Squamous Cell LC with occult primary

  1. #21
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    Things are unfortunately moving very slowly here. I finally got a CT-scan of my neck yesterday (donít have the results yet of course), but am no closer to having a biopsy done. I donít even have a preliminary appointment with an ENT yet.

    A week and a half ago, the staff at the oncologistís office reassured me that they would set everything up. They did make an appointment for the CT-scan but never communicated to me when it was. They told me when I called back a week later to inquire. At that time, I also said that I hadnít heard anything from the ENT yet. They insisted that they had already contacted the ENTís and I should be hearing from them soon. I asked if I could have the number so I could call them directly ... and it turned out to be the number of a pulmonologist, not an ENT. I called them back again. They recognized their mistake and we agreed on another (a real) ENT. So, I waited until the next afternoon, then called this ENTís office and they said they hadnít received anything at all from the oncologistís office. So, I tried calling the oncologistís office back to tell them they was still no order there, but I couldnít get through to the oncologistís office at all. On my fourth try, I got an answering service who informed me that the office was closed that Thursday. I thought that was strange because it is normally closed on Friday. I asked why Thursday too, but they had no idea.

    This office is part of a much larger chain: <State name> cancer specialists. I have no idea how to evaluate them. I didnít randomly choose them myself, but was referred by my PCP.

    I have a second appointment with the oncologist I saw this coming Tuesday. I will see how that goes.

    But I am wondering at what point do I just get myself to a well-known cancer center, like Moffitt. At this point, I am starting to have bizarre worries like I will have the wrong kind of biopsy or I will be misdiagnosed or somehow the tissue sample will be lost or ???

    Am I being impatient and overly demanding? Or does what I described above seem like a red flag?

  2. #22
    Super Moderator Top User po18guy's Avatar
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    Well, it took me two months after I knew I had cancer (it was obvious). This onvolved one primary doctor, one ENT, one surgeon, one oncologist, one pathologist - only to receive a mis (missed) diagnosis. So, I went to a world-class facility and got diagnosed.

  3. #23
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    Quote Originally Posted by po18guy View Post
    Well, it took me two months after I knew I had cancer (it was obvious). This onvolved one primary doctor, one ENT, one surgeon, one oncologist, one pathologist - only to receive a mis (missed) diagnosis. So, I went to a world-class facility and got diagnosed.
    Wow, I am sorry to hear that. That must have been infuriatingó particularly the misdiagnosis.

    So, I am taking that as an endorsement for the nuclear option (aka just go to well-known cancer center).

    After I posted lasted night, I did a little research on this cancer specialist chain. Apparently they have been accused of monopolistic practices, Medicare fraud, and unsafe medical practices and are in the midst of a whistle-blower law suit.

    Sigh. Itís unfortunate that the well-known cancer center I have in mind is 2.5 hours from where I live.

  4. #24
    Super Moderator Top User po18guy's Avatar
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    Go with a National Cancer Institute designated comprehensive cancer center. Even if it means flying. Do what it takes. You need peace of mind if things are OK, and world-class care if they are not.

    https://www.cancer.gov/research/nci-...r-centers/find

  5. #25
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    Po18 is right. Go to a national center. I listened to him and will get my bone marrow biopsy thus week at OHSU. Their technique is more modern than at my regular hospital and they will do more studies than Iíd get otherwise. And the OHSU oncologist is already sharing his valuations with my regular oncologist. Itís very comforting to know that Iím going to a place with world-class hematologist, and you deserve the same level of comfort.

  6. #26
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    Thanks. Frankly, I was still hesitating even after his last post, because it will be very inconvenient to do that. However, I just learned that my insurance — Aetna — does not cover second opinions at all. I am so glad I called and checked that out.

    That has definitely tipped the scale way over towards Moffitt!

  7. #27
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    Actually, Moffitt just said that every first visit is billed as a second opinion, no matter what. I asked how much that would cost out of pocket and they said —$500 to $1,500.

    Wow, dealing with the insurance is turning out to be just as stressful as getting a diagnosis

  8. #28
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    So, yesterday I spoke with a friend who is a public health expert. She told me I should continuing working with the local oncologist, at least through the biopsy. Then, once I have the slides, I should get a second opinion at the cancer center I mentioned before. She said I should get the ball rolling with the cancer center right away though, since it can take a long time to get an appointment. All of this I have essentially done or am doing. (I have started the registration process at the cancer center.) She also told me I should just suck it up and agree to pay for the second opinion at the cancer center even if they are less transparent about the costs than I would like.

    Today I am seeing my oncologist again. I will be getting the results of the CT scan of my neck, plus my blood test results.

    I am also happy to say that I now have an appointment for a pre-biopsy consultation with a local ENT (who seems to have a good reputation). It will be July 31st. So I have to keep on being patient.

    When I spoke with my oncologist last, he said he was going to recommend a needle biopsy. I asked for a biopsy done on a fully excised node. Itís not clear to me that we came to an agreement. Itís not even clear to me with who I need to come to an agreement with about this. The oncologist? The ENT? Both? What arguments should I use to get myself an excisional biopsy (to avoid false negatives & misdiagnoses)? What research supports this? Is it possible that his opting for the needle biopsy is driven in part by insurance reimbursements or other non-health related issues?

    One thing I am concerned about is the possibility that I will have a fine needle aspiration biopsy, I will get a false negative, but not be able to get a second biopsy covered by insurance because there seems to be no medical necessity. Maybe I should bring this up with my oncologist today?

    A very similar scenario actually happened to me three years ago and it led to me now being legally deaf in my left ear (and impaired in the other). The original ENT I was seeing misdiagnosed me with ďsudden sensorineural hearing loss,Ē a one-off condition. You lose hearing in one ear and thatís it. When I came back in for a follow-up hearing test a month later, I knew I was still losing hearing my left ear (the right hadnít been impacted yet). I knew it because I tested myself carefully every day and could tell that it was slowly slipping away. When I had the hearing test, it did indeed show a mild worsening across the board, in every frequency concerned. However, my ENT, instead of seeing this as a pattern that challenged his diagnosis said that the consistently but mildly lower results were all ďwithin the margin of error.Ē Then he wrote: ďNo change!Ē on my chart. I argued, but he insisted on the ďNo change!Ē Well, I continued to lose hearing but they absolutely refused to give me a retest because my last test showed that I wasnít having any problems! Such a frustrating Catch-22. It took me two and a half more months to get in to see a specialist, since they wouldnít refer me, because I was supposedly OK.

    I guess I just want to prevent a similar scenario from unfolding. So, I am probably answering my own question here, but it seems that this question about needle vs excisional biopsy should be a priority for my oncologist today.

  9. #29
    Super Moderator Top User po18guy's Avatar
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    Here is my skewed take on this: If you have lymphoma, you have it, right? It will make itself known and you treat it then. Even if you have it, it is certainly not an emergency. Are you remembering to live life while all of this medical motion is going on? Cancer or not, you cannot get this time back.

  10. #30
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    Quote Originally Posted by Melisande View Post

    When I spoke with my oncologist last, he said he was going to recommend a needle biopsy. I asked for a biopsy done on a fully excised node. It’s not clear to me that we came to an agreement. It’s not even clear to me with who I need to come to an agreement with about this. The oncologist? The ENT? Both? What arguments should I use to get myself an excisional biopsy (to avoid false negatives & misdiagnoses)? What research supports this? Is it possible that his opting for the needle biopsy is driven in part by insurance reimbursements or other non-health related issues?

    One thing I am concerned about is the possibility that I will have a fine needle aspiration biopsy, I will get a false negative, but not be able to get a second biopsy covered by insurance because there seems to be no medical necessity. Maybe I should bring this up with my oncologist today?

    I guess I just want to prevent a similar scenario from unfolding. So, I am probably answering my own question here, but it seems that this question about needle vs excisional biopsy should be a priority for my oncologist today.
    I'm curious about what your oncologist said. I mentioned this previously but I had a FNA / core biopsy done on a lymph node after my first ENT meeting. The biopsy was done a John Hopkins and they called it benign with no hedging or uncertainty. To me that seemed... bold... if false negatives are a common occurrence. After that results my ENT and I decided to wait 3 months. The end point is upcoming and I don't know what our next step will be. The nodes are still present and there may be more; it's hard to tell. With the possibility of a excision biopsy in my future I am interested in what you have learned. I am also uncertain if I should have the biopsy done by the local ENT, who seems great, vs going back up to John Hopkins.

 

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