New Member- any help appreciated

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YR2014
YR2014 Member Posts: 13
in Kidney Cancer #1

I have been having pain on the right side of my abdomen with a stabbing pain that radiates to my back. I was able to see a physcian and asked if I could have a ultrasound of my entire abdomen area but the physician felt I only needed an ultrasound of my Gallbadder. So to have the ultrasound I felt I needed I had to find another physician who would order it.  The ultrasound came back comfirming that I have a septated cyst in the lower pole of my right kidney. It measures 1.1x1.3x1.2cm. Since this confirmation, on 4-2-14, I have had an extremely difficult time finding the right physician to treat my condition.

I have a referral in with a Urologist but I am not sure if this person can help except to refer me to another specialist. In the area of California that I live there are very few physicians that deal with this issue. It looks like I will have to travel out of the area for help.  Can anyone help with names of physcians, what type of tests or scans I will need, foods or supplements that may help to stop the septated cyst from enlarging. I am not under the care of a physcian so I am not sure what steps I need to take to get help.

Any help will be appreciated.   Thank you.

YR2014 

 

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
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    Septated cyst

    YR2014,

     

    Many of us and the general population have small cysts on our Kidneys. There is a possability that a septated cyst could be Kidney Cancer, but not a high probability. This diagnosis is usually made by a Urologist with the help of a CT scan. The next step  for you is to follow up with the Urologist referral and I expect that he will order a CT scan with and without contrast. He will also do some blood work related to hidney function.

    If it does turn out to be Kidney Cancer it is very small and close to 100% curable by surgery. All of us on this board have had the surgery. Mine was 12 years ago.

    Additionally if it does turn out to be Kidney Cancer your Urologist if he is not a Kidney Cancer specialist will refer you to a specialist.

    I know hearing the words Kidney Cancer is very scary. I sure was. However with small tumors the bark is worse than the bite.

    May you not have to join our club, but if you do have to we will help you thru it.

     

    Icemantoo

  • safado
    safado Member Posts: 17
    #3
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    icemantoo said:

    Septated cyst

    YR2014,

     

    Many of us and the general population have small cysts on our Kidneys. There is a possability that a septated cyst could be Kidney Cancer, but not a high probability. This diagnosis is usually made by a Urologist with the help of a CT scan. The next step  for you is to follow up with the Urologist referral and I expect that he will order a CT scan with and without contrast. He will also do some blood work related to hidney function.

    If it does turn out to be Kidney Cancer it is very small and close to 100% curable by surgery. All of us on this board have had the surgery. Mine was 12 years ago.

    Additionally if it does turn out to be Kidney Cancer your Urologist if he is not a Kidney Cancer specialist will refer you to a specialist.

    I know hearing the words Kidney Cancer is very scary. I sure was. However with small tumors the bark is worse than the bite.

    May you not have to join our club, but if you do have to we will help you thru it.

     

    Icemantoo

    Good luck YR!
    We've all been

    Good luck YR!

    We've all been there.

    Your scenario sounds almost... enviable!

    If you're in rural California - you will likely need to travel to get specialized care.  Some of the big boys - Mayo & MD Anderson - offer telemedicine options.

  • GSRon
    GSRon Member Posts: 1,303 Member
    #4
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    YR, California is a big

    YR, California is a big state... rural can mean a lot of real estate..  We have some awesome doctors in both north and south..  In the south you have UCLA and City of Hope - Duarte.  Up north we have USF and Stanford.  Those are the premier RCC places in the state.  Plus for lessor issues (and your issue may not be Cancer) there are all kinds of good doctors out here..  Starting with a local Urologist is OK.  Go further once more is known.  Hang in there.. hope you do not need to be here with us...

    Ron

  • avdoty
    avdoty Member Posts: 62
    #5
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    GSRon said:

    YR, California is a big

    YR, California is a big state... rural can mean a lot of real estate..  We have some awesome doctors in both north and south..  In the south you have UCLA and City of Hope - Duarte.  Up north we have USF and Stanford.  Those are the premier RCC places in the state.  Plus for lessor issues (and your issue may not be Cancer) there are all kinds of good doctors out here..  Starting with a local Urologist is OK.  Go further once more is known.  Hang in there.. hope you do not need to be here with us...

    Ron

    Stanford

    I had my partial nephrectomy in Northern California at Stanford Hospital on May 8th. The uro-oncologist that did the robotic surgery is Dr. Geoffrey Sonn. I've been really happy with him and the hospital and recommend both very highly.  The only thing I'm concerned about post op is that my left thigh went numb a few days ago -- right at 2 weeks post op.  Not sure if it happened as a result of the surgery or not. Still figuring it out. 

  • GSRon
    GSRon Member Posts: 1,303 Member
    #6
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    avdoty said:

    Stanford

    I had my partial nephrectomy in Northern California at Stanford Hospital on May 8th. The uro-oncologist that did the robotic surgery is Dr. Geoffrey Sonn. I've been really happy with him and the hospital and recommend both very highly.  The only thing I'm concerned about post op is that my left thigh went numb a few days ago -- right at 2 weeks post op.  Not sure if it happened as a result of the surgery or not. Still figuring it out. 

    Avdoty... I do not see any

    Avdoty... I do not see any info in your profile relating to the pathology of your tumor.  FYI, I do all my follow ups at Stanford.  You can ask your surgeon for a referral.  Follow ups are typically either 3 months or 6 months at first, which is pretty easy.  

    I must say, I tried to get my follow ups close to where I live down in the Monterey area.. that was a total failure and I fired two Oncologists, luckily Stanford gladly took me.

    Ron 

  • Srashedb
    Srashedb Member Posts: 482 Member
    #7
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    GSRon said:

    YR, California is a big

    YR, California is a big state... rural can mean a lot of real estate..  We have some awesome doctors in both north and south..  In the south you have UCLA and City of Hope - Duarte.  Up north we have USF and Stanford.  Those are the premier RCC places in the state.  Plus for lessor issues (and your issue may not be Cancer) there are all kinds of good doctors out here..  Starting with a local Urologist is OK.  Go further once more is known.  Hang in there.. hope you do not need to be here with us...

    Ron

    A slight correction

    it is UCSF up north; USF is a different university and my alma mater.

    Sarah

     

  • GSRon
    GSRon Member Posts: 1,303 Member
    #8
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    Srashedb said:

    A slight correction

    it is UCSF up north; USF is a different university and my alma mater.

    Sarah

     

    Thanks Sarah...  Ooops...

    Thanks Sarah...  Ooops... sorry, my bad.   Oh well, what is one letter between us pals..?  Laughing

    Ron

  • avdoty
    avdoty Member Posts: 62
    #9
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    GSRon said:

    Avdoty... I do not see any

    Avdoty... I do not see any info in your profile relating to the pathology of your tumor.  FYI, I do all my follow ups at Stanford.  You can ask your surgeon for a referral.  Follow ups are typically either 3 months or 6 months at first, which is pretty easy.  

    I must say, I tried to get my follow ups close to where I live down in the Monterey area.. that was a total failure and I fired two Oncologists, luckily Stanford gladly took me.

    Ron 

    Stanford

    Thanks Ron.  The surgeon told me that my tumor was Stage I RCC and that all of the cancer cells were removed.  I'll get a copy of my pathology report when I go for my surgery follow up next week and will post the specifics on my profile.  I also got referred to a neurologist this week to deal with the numbness in my thigh.  Like you, I've got a long commute (about 2 hrs) to Stanford.   So all of these appointments are an extreme hassle.  But, I wouldn't go anywhere else. 

     

    Allen     

  • GSRon
    GSRon Member Posts: 1,303 Member
    #10
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    avdoty said:

    Stanford

    Thanks Ron.  The surgeon told me that my tumor was Stage I RCC and that all of the cancer cells were removed.  I'll get a copy of my pathology report when I go for my surgery follow up next week and will post the specifics on my profile.  I also got referred to a neurologist this week to deal with the numbness in my thigh.  Like you, I've got a long commute (about 2 hrs) to Stanford.   So all of these appointments are an extreme hassle.  But, I wouldn't go anywhere else. 

     

    Allen     

    Hi Allen... if you are indeed

    Hi Allen... if you are indeed stage one, then most likely you will be offered 6 month follow ups for the first "X" number of years, then an annual check up.  So, taking one day every six months is no big deal when you have the rest of your life ahead of you...    

    Good Luck..!

    Ron

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