Re-test pathology

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lobbyist0724
lobbyist0724 Member Posts: 515 Member
in Kidney Cancer #1

Hi all, just wondering have anyone done a re-test on the pathology result to ensure a proper treatment plan, and do you think it is neccessary?

Carmen

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  • stub1969
    stub1969 Member Posts: 966 Member
    #2
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    I have not

    But I'm curious what's driving your doubts with the original pathology reading?

    Stub

  • hardo718
    hardo718 Member Posts: 853 Member
    #3
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    Mine was done twice

    Not my choice, but my surgeon's.  It was done at the facility where I had the surgery and was also passed on to Mayo Clinic.  Not sure why but I was given a copy of the pathology report from Mayo.

    Donna~

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    edited February 2017 #4
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    Free Second Opinion

    Somehow, I found my pathology report is not as detailed in comparison to the others that I read online. So I came across a service called BestDoctor which can provide me a second opinion on the treatment plan and re-test the pathology. It is also covered by my insurance, so I am thinking to give it a try.

    Carmen

     

  • NewDay
    NewDay Member Posts: 272
    #5
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    Pathology 2nd, 3rd opinion

    My original pathology report stated "unclassified".  After learning from another website that knowing the correct histology can make a difference in chosing the right treatment.  I had my slides send to MD Anderson for another opinion.  Other patients recommended them because they are experts in rare kidney cancers.  They classified it as translocation xp11.2 which is extremely rare.  I contacted NIH because they discovered this particular type.  They ran the pathology and determined that it was not.  It is an "unusual" non-clear cell placing back in the "unclassified" category.  I believe in always getting second opinions on things that can impact treatment, but the problem with second opinions that disagree with the first one is that you don't know which one is right.

    I had my records sent to MD Anderson myself and did not need a doctor involved.  My insurance covered it.  I would be sure to have an institution that specializes in kidney cancer perform the test.

    It is true that the histology can dictate which treatment should be tried, but those decisions are based on statistics.  I was told that none of the existing drugs would work on "unclassified" RCC and was not given a good prognosis.  Much to their surprise, Inlyta has been working great for me for almost 3 years.  

  • jason.2835
    jason.2835 Member Posts: 337 Member
    edited February 2017 #6
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    Always Wanted to...

    I've always wanted to have that done.  May ask about it at my next doctor visit.  I had a "partially cystic" variant of RCC, but in the end they classified as regular clear cell.  THere is a variant of cystic rcc called "multilocular cystic RCC," and while it is still considered a malignant neoplasm, it has NEVER been shown to metastasize in a patient, EVER.  I always wondered if it was possible that this is what I had... The peace of mind alone would be worth the cost, whatever it would be...  If it's free I say go for it.

    - Jay.

  • todd121
    todd121 Member Posts: 1,448 Member
    #7
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    Pathology

    When I went for second opinions to City of Hope, Cedars and USC, they asked to have my slides sent to them to have their pathologist look. My type was a common clear cell RCC. Nothing changed when I had them look again.

    If you've had your only tumor removed, there really isn't any treatment that is approved. There are some clinical trials you might be eligible for. They will decide if they need to have a second look at your slides based on your original and also if any other screenings need to be done. I don't see the point in getting another pathology report if you have a typical clear cell RCC diagnosis, particularly if the tumor has been removed. There's no approved adjuvant therapy for kidney cancer. Surveillance is the only option outside of clinical trials.

    Best wishes,

    Todd

    P.S. I don't think any of my tumor was saved for genetic testing. I'm not sure. I've often wondered if I should have done that. I've heard some do. Probably too late for me.

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #8
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    jason.2835 said:

    Always Wanted to...

    I've always wanted to have that done.  May ask about it at my next doctor visit.  I had a "partially cystic" variant of RCC, but in the end they classified as regular clear cell.  THere is a variant of cystic rcc called "multilocular cystic RCC," and while it is still considered a malignant neoplasm, it has NEVER been shown to metastasize in a patient, EVER.  I always wondered if it was possible that this is what I had... The peace of mind alone would be worth the cost, whatever it would be...  If it's free I say go for it.

    - Jay.

    Thank you Jason, I am pretty

    Thank you Jason, I am pretty much in the same stuation, I was told that I had a cystics mass before the pathology but the pathology report only mentioned it is partially cystic and partially solid. It didment mention about the color, the size of the cystic area, is it multiloculated and etc. I once thought that it can be the Multiloculated RCC as well :) I was also told that the more cytic area, the better prognosis as well.

    I totally agree with you about the peace of mind, so I have ask them to re-test the pathology.

    Take care,

    Carmen

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #9
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    todd121 said:

    Pathology

    When I went for second opinions to City of Hope, Cedars and USC, they asked to have my slides sent to them to have their pathologist look. My type was a common clear cell RCC. Nothing changed when I had them look again.

    If you've had your only tumor removed, there really isn't any treatment that is approved. There are some clinical trials you might be eligible for. They will decide if they need to have a second look at your slides based on your original and also if any other screenings need to be done. I don't see the point in getting another pathology report if you have a typical clear cell RCC diagnosis, particularly if the tumor has been removed. There's no approved adjuvant therapy for kidney cancer. Surveillance is the only option outside of clinical trials.

    Best wishes,

    Todd

    P.S. I don't think any of my tumor was saved for genetic testing. I'm not sure. I've often wondered if I should have done that. I've heard some do. Probably too late for me.

    Thanks Todd, I live in Canada

    Thanks Todd, I live in Canada and the surveillance scheduler is not standardize and very different between stages. Also, CT is the available for lower risk patients. Sometimes, it feels very scary thinking about what if the pathology report is not accurate and just want to have that peace of mind.

    Take care,

    Carmen

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