Bi-lateral kidney cancer

djeske4
djeske4 Member Posts: 2
edited February 2013 in Kidney Cancer #1

May 2, 2012 to be exact.... I was diagnosed with bi-lateral kidney cancer. It is very uncommon first because of my age(42 on August 23)and then both kidney's to have it. On June 4 I under went a partial nephrectomy on my right kidney, removing one tumor with two forms of cancer - the larger type called Papillary Type 2 and the small type called Chromophobe. The surgery was a success and they saved about 2/3's of my kidney. July 30 I went through another partial nephrectomy on his left kidney. The first surgery was done robotically and this second one was an open procedure as they needed to also test two lymph nodes on the right side. They removed 3 tumors off the left kidney and was able to save 3/4's of that kidney. The lymph nodes did come back positive so they removed 22 total from both the left and right and those 2 enlarged ones were the only two that were positive. AT my last CT scan they also spotted a couple nodules on my lungs but they are too small to do anything about right now.

My wife and I know that the only way to get rid of this kidney cancer is to physically remove it or cut it out. At my follow up appointment, we were told that basically there is nothing we can do at the moment. I will have to go through CT scans every three months for the next couple of years. My wife and I both have the utmost faith in God and say / receive many prayers.

If the kidney cancer would get worse - there are medicines that I can go on to try and hault the cancer. There is also a very harsh treatment that could be done but it would be very toxic to my body and they would only recommend it to me down the road because of my age and good physical health.

Any thoughts or recommendations for anyone would be greatly appreciated!

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2
    Very unusual indeed

    Bi-lateral is unusual, but not unheard of and we have numerous members here a lot younger than you are.  But what is strikingly rare is to have a mixture of pRCC and chRCC, and on the same kidney, at that!!  It's all the more strange since those two sub-types aren't much alike.

    Plesae give us more information.  What was the pathology of your other kidney tumor?  What does your path report say about the histology of the two affected lymph nodes - was that the same as the right kidney - mixed sub-types?  Have your doctors said how surprised they were at your situation?

    It's generally believed that HD IL2, which I guess is the treatment you're anticipating as possible later, is only for clear cell RCC. However, no-one really knows if it works for other subtypes because the number of such cases is too small to draw safe conclusions and I would bet it's never been tried on someone with both of the main rarer sub-types.  It is very toxic, but the effects are fully reversible and soon largely forgotten, so don't worry about that aspect.

    Hang out with us all here and keep us posted on all the further information you get and don't hesitate to press your docs for all the information they can give you.   We'll do our best to help you through whatever happens in future.

  • angec
    angec Member Posts: 924 Member
    #3
    I am just wondering why they

    I am just wondering why they wouldn't start you on any meds right away.. considering the fact that you had positive lymph nodes two kidneys and now in lungs.  How about Votrient?  I hope you do stick around here as there are many here that have experienced good results first hand and can guide you.  In the meantime, keep up with three month full body ct/cat scans as these are very beneficial.  Praying for you!  

     

    What was the size of the tumors if you don't mind?  Did you have many symptoms that led to diagnosis?

  • Limelife50
    Limelife50 Member Posts: 476
    #4
    Texas_wedge said:

    Very unusual indeed

    Bi-lateral is unusual, but not unheard of and we have numerous members here a lot younger than you are.  But what is strikingly rare is to have a mixture of pRCC and chRCC, and on the same kidney, at that!!  It's all the more strange since those two sub-types aren't much alike.

    Plesae give us more information.  What was the pathology of your other kidney tumor?  What does your path report say about the histology of the two affected lymph nodes - was that the same as the right kidney - mixed sub-types?  Have your doctors said how surprised they were at your situation?

    It's generally believed that HD IL2, which I guess is the treatment you're anticipating as possible later, is only for clear cell RCC. However, no-one really knows if it works for other subtypes because the number of such cases is too small to draw safe conclusions and I would bet it's never been tried on someone with both of the main rarer sub-types.  It is very toxic, but the effects are fully reversible and soon largely forgotten, so don't worry about that aspect.

    Hang out with us all here and keep us posted on all the further information you get and don't hesitate to press your docs for all the information they can give you.   We'll do our best to help you through whatever happens in future.

    Texas The Lawyer

    I counted 6 questions so i guess that would be a start,to elaborate a little more this case would be reffered as synchronous bilateral since the tumors were found in both kidneys within 6 months of each other,i do not agree with angec since those spots on your lungs need to be verified first

  • angec
    angec Member Posts: 924 Member
    #5
    Limelife50 said:

    Texas The Lawyer

    I counted 6 questions so i guess that would be a start,to elaborate a little more this case would be reffered as synchronous bilateral since the tumors were found in both kidneys within 6 months of each other,i do not agree with angec since those spots on your lungs need to be verified first

    He did say two nodes were

    He did say two nodes were positive so hence why I was wondering why no meds if they found spots on his lungs.  Two kidneys, two nodes and spots on lungs. that sounds like reason enough for treatment.  Is it usual practice to test the spots on lungs first?  I am not sure. In any case I hope all turns out well. We learn so much from each other here. I value everyone's opinion and experience.

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