Have to get a biopsy......

    • Gold Top Dog

    Have to get a biopsy......

     Well, since my lymph nodes lit up on the PET scan, my family doctor referred me to a cancer doctor in our area.  I went on Monday with my mom, but did not like him at all.  First of all, I *always* ask my doctors (or vets for that matter) lots of questions.  That's just what I do.  My mom does also.  The doctor did not seem like he was very into us asking all the questions.  He was also very difficult to get clear information from.  He was very wishy-washy once actually questioned, and that does not instill much confidence in a patient.  Also, he seemed dismissive and a bit condescending, kind of treating me like I was this hysterical woman that was just completely over reacting and taking all this a bit too seriously.  IDK, I just didn't like him. 

    Since the lymph nodes are in my chest and thus in a tricky location, he referred me to a cardio-thoracic surgeon for the biopsy (although he could not tell me what kind of biopsy he might do, or even if this surgeon did this sort of thing often or not).  I went to a consultation with the sugeon yesterday.  Apparently the kind of biopsy he wants to do involves cutting the lower part of my throat in front of my wind pipe and going down with a light and forceps to take a tissue sample from the offending lymph nodes.  When discussing this surgery he basically gave me a list of horrible things that can happen--a collapsed lung, hitting an artery and me bleeding to death on the table, etc. 

    It also turns out that this same doctor did the same procedure on a coworker of mine.  During the procedure the doctor hit a nerve and paralyzed his vocal cords.  he now has a box in his throat to help with speech and also sounds like he has laryngitis.  He is permanently damaged. 

    So, with that info combined with the fact that the biopsy procedure sounds so delicate and can damage lots of very important things if it goes wrong, I had my family doctor refer me to Northwestern in Chicago, which thankfully our insurance covers.  I have to gather my films and am going in for a consultation on Wednesday....

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    oh no! the horror! i think you should go to a doctor you are comfortable with (and that seems like he actually knows what he's doing!).

    hope everything turns out ok!! good health vibes!!

    • Gold Top Dog

    Christina,

    A friend of mine delt with this in 1992, though hers was very advanced. All I can say is do everything in your power to stay strong, and fight for your right to know and question. Get second and third opinions, ask about everything!

    I am not sure where in Indiana your based. But here is a news story I believe you should look at, please read Torrey, Ferguson and Frydman.

    http://www.cnn.com/2008/HEALTH/07/03/ep.patient.heroes/index.html#cnnSTCOther1

    I will share my friends story, the ups, the downs, the good, the bad and the ugly if you so wish. I will be keeping you in my thoughts in the mean time.

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    Wow, it's lucky that the node is accessable via cervical mediastinoscopy. A cardiothoracic surgeon is the ONLY person that should be doing this procedure so your family physician did the right thing. I would recommend asking for a "thoracic" surgeon who specializes in lung disease as they do more of these procedures because they are frequently done in concert with lung resections while "cardiac" surgeons rarely do them. Many "thoracic" surgeons do a separate fellowship in lung cancer surgery following cardiothoracic surgery fellowship. Make sure to ask the surgeon whether they are a thoracic or cardiac cardiothoracic surgeon and how many they have done in the last month. Mediastinoscopy is a quick, outpatient procedure when done in skilled hands. I've only done about 25 in my training, the thoracic surgeons at my program do at least 2-5 a week. Our patients stay an hour or two and then go home, they don't even need pain medication other then tylenol usually. That is the volume you should look for. If the surgeon tells you that volume is high, or no one does it, they are wrong. Let me know if you have any questions.

    BTW, it was completely appropriate that he gave you the list of "horrible complications". Although this procedure is fast and outpatient, given the location, the complications associated are very significant and it would be malpractice in my mind not to tell you that that potential is there. This is why this procedure in particular i would never be ok with anyone doing it on me unless they could prove to me that they had sufficient experience with it. Dr. Mckenna who is a worlds authority in minimally invasive thoracic surgey is randomly one of my attendings at cedars, if you have any concern with the guy at northwestern let me know, I'll ask him who is good in your area. He knows everyone lol.

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    The surgeon that we have already seen told us that it would require an overnight stay at the hospital.  Is that maybe a different procedure? 

    • Gold Top Dog
    Nope, not at all, many people admit for a 23 hour hold. We don't. Just like gallbladder resections, some send the patients home immediately, some keep overnite. Surgeon preference :)
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     Best wishes to you! I've heard really good things about Northwestern... here's hoping for a painless biopsy, quick recovery, and discovery that it was all just a big scare anyway.

    • Gold Top Dog

     Wow, this has got to be very scary and intimidating.  I hope it all turns out to be nothing.  Sending positive thoughts.

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    • Gold Top Dog

     wow all I can say is good luck and be strong

    keep asking the questions, it is your body and your right to know what is happening

    our prayers are with you

    Karen

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    Christina, i have been thinking about you. I hope your biopsy goes okay, and i'm praying hard that everything turns out okay!!

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    Christina, I'm really sorry your PET didn't give you better results, but just know that all of us are keeping you in our thoughts and prayers.  And whateve turns up, it looks like they're on top of it early.

    Joyce

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    I had a partial thyroidectomy and altho the surgery will be somewhat different for you, mine had some of the same potential complications (loss of voice, excessive bleeding). I had no problems at all. My Dr's policy was to stay 24 hrs in case of bleeding, but he came in the afternoon of my surgery and said I'd done so great, I could go home. The next morning, I honestly felt 95% of normal and was going about my normal activities but enjoying the time I'd taken off.

    I know what you're dealing with is more serious than my case, and I will keep you in my thoughts and prayers.

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    I'm still not caught up from being gone last weekend -- you have honestly been on my heart every day.  I've got a little royal blue sticky on my printer that reminds me of you several times a day!!  All my prayers and good thots.