Second Opinion

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Jen T
Jen T Member Posts: 20
edited July 2017 in Kidney Cancer #1

While I'm waiting to have the partial nephectomy I of course have been coming up with new things to worry about. The latest is "should I get a second opinion before they take out part of my kidney". I'm pretty sure that the partial nephectomy is the standard treatment that they will all recomend but should I go to another doctor just to make sure we are on the right path as far as surgery and oberservation? I have a 3.6 cm solid mass in my right that they are going to remove but I also have a 1.4 cm cyst on the left that my dr seems to be content to observe. I'm just so concerned that the left kidney is cancerous too or that there will be metastasis somewhere that we are missing. I live near Nashville and I'd like to see a doctor at Vanderbilt but my insurance won't cover it. I'm not even sure I can get in there before the surgery anyway. Would it  be worth it to see any oncologist or a different urologist even after the surgery? Should I try to go to Vanderbilt for just the consult, even if I pay out of pocket? Its all so overwhelming.

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  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
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    My thoughts

    Jen,

     

    The opinion you have is well within the norm. Because there is a possability of bi-lateral kidney cancer down the road I would look into an additional  consult if you can work it in.

     

     

    Icemantoo

  • APny
    APny Member Posts: 1,995 Member
    #3
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    At 1.4 cm they should be able

    At 1.4 cm they should be able to tell if it's RCC or a cyst so I wouldn't worry about bilateral kidney cancer. Chances are they'd be removing it if they were concerned. Bilateral is rare. Also, while there are no guarantees, at 3.6 cms most likely you're stage 1 and mets are pretty uncommon at that stage and size. A second opinion never hurts but yes, partial neph is the standard procedure unless the location makes it impossible.

  • todd121
    todd121 Member Posts: 1,448 Member
    #4
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    Opinions

    If it gives you peace of mind, I'd get another opinion. I'd even delay the surgery to get it. These things grow slow. Bilateral kidney cancer is rare but if you do have it, there's a good chance it might be one of the genetic forms of kidney cancer which they've studied extensively at NIH. Genetic kidney cancer is the best understood form of kidney cancer and at NIH they really know how to treat this type of cancer. Unfortunately, non-RCC specialists wouldn't know it (and I'm not sure most urologists would have any knowledge of it). So if you haven't seen a medical oncologist specializing in RCC, it might be worth getting an opinion from one. If the other mass is most likely a cyst based on imaging, then this is all a different story. Cysts they can often tell, but 1.4 cm is a pretty large one. You said the urologist is happy to observe it. Is that because he/she thinks it is a cyst?

    If it's unlikely the 1.4 CM is a tumor and it is probably a cyst, then you're probably ok moving forward. Still, peace of mind is worth a lot.

    You can usually get in for a consult quickly if you get in touch with the doctor's nurse you want to see and explain the entire situation. They often keep some appointments open for situations like this. I did this 2-3 times and was able to get in quickly. I hand carried everything. You can pick up copies of your images usually same day if you go into the imaging center and get copies of your records also same day if you go in. Then you can overnight everything or even bring them with you to the appointment. It never hurts to ask. I found the oncologists to be very helpful in working me in for second opinions that needed to be done quickly because of treatment decisions or scheduled surgery, but you have to ask and you have to tell them the entire story (and you need to get to the right person, which is not usually the regular scheduler or regular front desk person, it's usually the doctor's nurse or PA or assistant).

    Best wishes,

    Todd

  • hardo718
    hardo718 Member Posts: 853 Member
    #5
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    If you feel like it'll eat at your brain

    and you'll be wishing you'd gotten a second opinion then get one now.  Insurance typically will cooperate where 2nd opinions are requested.  I would suggest if you do go for a 2nd, to see a doctor with another group, not just an associate of the doctor you're seeing.

    Best wishes & keep us posted.

    Donna~

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