Conflicting tests on liver mets

Boleyn-Fitz
Boleyn-Fitz Member Posts: 12

Hi everyone--

This is my first post, and I was hoping to tap into some of your collective wisdom. A little over six months ago I had a radical nephrectomy and now I have some conflicting evidence about whether I have progressed to stage IV. My CT scan at six months showed spots on my liver and my docs were convinced that they were mets. I had two more CT scans, a bone scan, an MRI of my brain, and a needle biopsy. There was no evidence that the cancer spread anywhere other than the liver and then the liver biopsy came back NEGATIVE. At this point my docs were convinced that the liver spots must be benign but order an MRI of my liver to get a closer look. The MRI, however, again looked like liver mets. So my docs ordered another liver biopsy on the theory that the first biopsy missed the lesion. I haven't recieved a full pathology report for the second biopsy, but they did a prelimary analysis of the first sample and it again looks like the tissue is normal. Either the scans are wrong or the biopsies are wrong. Do any of you have experience or insight into false positive scans or false negative biopsies?

Comments

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    My lack of wisdom

    Boelyn,

    As a survivor who is not a doctor a few of my thoughts. Mets from RCC first usually show up in the lung. Did you also have a chest x-ray or Chest CT and if so what were the results?  As far as I understand RCC does not usually spread to the liver.

    How big was your tumor?

     

    Hopefully these are just false positives.

     

    Are any of your docs Oncologists. If not you shuld seek counsel with one.

     

    Icemantoo

  • Boleyn-Fitz
    Boleyn-Fitz Member Posts: 12
    icemantoo said:

    My lack of wisdom

    Boelyn,

    As a survivor who is not a doctor a few of my thoughts. Mets from RCC first usually show up in the lung. Did you also have a chest x-ray or Chest CT and if so what were the results?  As far as I understand RCC does not usually spread to the liver.

    How big was your tumor?

     

    Hopefully these are just false positives.

     

    Are any of your docs Oncologists. If not you shuld seek counsel with one.

     

    Icemantoo

    Thanks for the reply

    Thanks for the reply Icemantoo. The CT scan of my chest was clear. I did get an oncologist after the initial CT scan of my liver. She has gone back and forth with the different tests. She was convinced of mets in the liver after the first scan, then thought hemangioma (benign lesion) after the first biopsy, and she was leaning back toward mets after the MRI. I meet with her again next week, but I'm not convinced that she has much experience with the conflicting test results that I'm getting.

  • NanoSecond
    NanoSecond Member Posts: 653
    icemantoo said:

    My lack of wisdom

    Boelyn,

    As a survivor who is not a doctor a few of my thoughts. Mets from RCC first usually show up in the lung. Did you also have a chest x-ray or Chest CT and if so what were the results?  As far as I understand RCC does not usually spread to the liver.

    How big was your tumor?

     

    Hopefully these are just false positives.

     

    Are any of your docs Oncologists. If not you shuld seek counsel with one.

     

    Icemantoo

    Correction

    Sorry Ice-Man but mRCC certainly does show up in the liver.  Just not as often as the lungs or bones.  In fact mRCC can literally show up anywhere.

    I am not sure what is going in Boelyn's case though.  I think he needs to seek out a second opinion to try to reconcile the conflicting data.  However, a CT-scan with contrast would be the better method for imaging the liver.  MRI's are subject to the least amount of internal movement blurring the image.

    Incidentally, I am fighting multiple lesions in my liver.  At the beginning of March CT-scans showed that 3 of them were over 4cm and were quite aggressive (they had tripled in size from December).  However I believe I have stopped their progression thanks to getting enrolled in a clinical trial of a new anti-PDL1 drug.  I'll know for sure after my next CT-scan in May.

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    Correction

    Sorry I gave an incorrect response. We try our best. Everybody should always question and take with a grain of salt any medical statements on this board as they can be wrong. And for their part the medical profession is not perfect either.

     

     

    Icemantoo

  • donna_lee
    donna_lee Member Posts: 1,024 Member
    icemantoo said:

    Correction

    Sorry I gave an incorrect response. We try our best. Everybody should always question and take with a grain of salt any medical statements on this board as they can be wrong. And for their part the medical profession is not perfect either.

     

     

    Icemantoo

    Liver mets or not

    I've been there.  Although they were able to confirm during the original ultrasound/CT/bone scan and then surgery, that there were mets to the left lobe of the liver and it was removed.  At the same cut and sew party, there were also several suspicious spots found with "on the table" xrays, which were also removed, but found to be benign. Also removed were a cancerous set of nodes, and the gall bladder.

    I still have spots on what remains of my liver, that have been determined to be cysts, as they have not enlarged during the subsequent CT's  There was also a suspicious blob (maybe an hemangioma) observed on a CT.  A follow up ultrasound confirmed.  An hemangioma is like a big strawberry birthmark-very vascular-and the US was able to confirm it with freeze frames of the pulsing of blood through it.

    Now to your sense of limbo and what the Doc is doing. Another opinion with an kidney cancer specialist, and a review of all your biopsies and path reports by another lab. Yes, RCC can mets to other organs, but it is still kidney cancer or more specifically RCC and you need to be treated accordingly

    Here's where the gang all chime in and say, "Be your own advocate. Educate yourself. Get copies of every document or report. And question what the doctor is doing because you want to understand what is being done for you, not to you."

    Most of all, hang in there.  Iceman is still here after 11-12 years, and I'm here after 8.

    Donna

     

     

     

     

    because you 

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    donna_lee said:

    Liver mets or not

    I've been there.  Although they were able to confirm during the original ultrasound/CT/bone scan and then surgery, that there were mets to the left lobe of the liver and it was removed.  At the same cut and sew party, there were also several suspicious spots found with "on the table" xrays, which were also removed, but found to be benign. Also removed were a cancerous set of nodes, and the gall bladder.

    I still have spots on what remains of my liver, that have been determined to be cysts, as they have not enlarged during the subsequent CT's  There was also a suspicious blob (maybe an hemangioma) observed on a CT.  A follow up ultrasound confirmed.  An hemangioma is like a big strawberry birthmark-very vascular-and the US was able to confirm it with freeze frames of the pulsing of blood through it.

    Now to your sense of limbo and what the Doc is doing. Another opinion with an kidney cancer specialist, and a review of all your biopsies and path reports by another lab. Yes, RCC can mets to other organs, but it is still kidney cancer or more specifically RCC and you need to be treated accordingly

    Here's where the gang all chime in and say, "Be your own advocate. Educate yourself. Get copies of every document or report. And question what the doctor is doing because you want to understand what is being done for you, not to you."

    Most of all, hang in there.  Iceman is still here after 11-12 years, and I'm here after 8.

    Donna

     

     

     

     

    because you 

    Hi Boelyn,
    You must be

    Hi Boelyn,

    You must be feeliing like you are on a roller coaster. Hopefully you get the best outcome possible. We are here to support you.

    You are in my thoughts and prayers.

    Hugs

    Jojo

  • Boleyn-Fitz
    Boleyn-Fitz Member Posts: 12
    Thanks for the input

    Thanks for the input everyone. I got the full pathology report today, and it now looks like mets on the liver. All the samples from the first biopsy came back negative and the first sample from the second biopsy came back negative but the last two samples were postive. So, mystery solved. The intervential radiologists just missed on four of the six samples that they took. My oncologist is looking into ablative therapy since the metastases have only spread to one organ so far. I'm about to search the discussion board to see how others have fared with ablative therapy.

  • brea588
    brea588 Member Posts: 240

    Thanks for the input

    Thanks for the input everyone. I got the full pathology report today, and it now looks like mets on the liver. All the samples from the first biopsy came back negative and the first sample from the second biopsy came back negative but the last two samples were postive. So, mystery solved. The intervential radiologists just missed on four of the six samples that they took. My oncologist is looking into ablative therapy since the metastases have only spread to one organ so far. I'm about to search the discussion board to see how others have fared with ablative therapy.

    So Sorry

    So sorry for the news you got today with it being mets.  I will lift you up in my prayers every night.

  • Djinnie
    Djinnie Member Posts: 945

    Thanks for the input

    Thanks for the input everyone. I got the full pathology report today, and it now looks like mets on the liver. All the samples from the first biopsy came back negative and the first sample from the second biopsy came back negative but the last two samples were postive. So, mystery solved. The intervential radiologists just missed on four of the six samples that they took. My oncologist is looking into ablative therapy since the metastases have only spread to one organ so far. I'm about to search the discussion board to see how others have fared with ablative therapy.

    Radio Frequency Ablation!

    Hi Boleyn, I am sorry to hear your news, but at least you have a clearer indication of what's going on now. I have had Radio Frequency Ablation on my kidney, I have also recently had a partial nephrectomy, and believe me the ablation was far less traumatic. I was up and around in no time with very little pain, more soreness than anything. I hope all goes well for you, take care:)

     

    Djinnie x

  • danbren2
    danbren2 Member Posts: 311

    Thanks for the input

    Thanks for the input everyone. I got the full pathology report today, and it now looks like mets on the liver. All the samples from the first biopsy came back negative and the first sample from the second biopsy came back negative but the last two samples were postive. So, mystery solved. The intervential radiologists just missed on four of the six samples that they took. My oncologist is looking into ablative therapy since the metastases have only spread to one organ so far. I'm about to search the discussion board to see how others have fared with ablative therapy.

    Sorry!

    Boleyn-Fitz,

         I am hoping everything will be good for you and the Cancer is in no other organ.  Please keep us posted on your great progress, I just know you will be doing wonderfully in no time at all.  Wishing for speeding recovery on what ever treatment you decide will be the best for you.

                                                         Prayers of good health,

                                                          Brenda