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K93
K93 Member Posts: 33 Member

I'm new here, so bare with me. I'm not super tech savvy. 

 

Last week I was in the hospital for a bowel obstruction. Had a cat scan with contrast done, and it found cysts on my kindeys. One I was aware of, and in the process of getting a referral to see a Nephrologist for. I was surprised when the surgeon had told me there was two smaller ones considering I had a cat scan done for kidney pain a month or so earlier. 

 

A day after being discharged, I am gathering all my things for my follow up, and read my discharge paperwork. On it says slightly complicated cyst on left kidney. Odd considering none of the doctors (at least four) I saw mentioned it. Neither did the surgeon. Unfortunately, I cannot reach out to the hospital doctor. I wasn't given the size or anything. Mentioned it at my follow up, and was told I couldn't be sent for a biopsy because it was last minute. 

 

I have an appointment with the Nephrologist on Wednesday. 

I just don't know what to do, or expect. 

 

I have three kids, and it's not helping my anxiety. I am so afraid. 

 

Sorry for writing so much. I'm just so confused.

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Comments

  • Sheila Mc
    Sheila Mc Member Posts: 20
    edited October 2020 #2
    Cyst on Kidney

    try not to worry, your Nephrologist will discuss your scan results and options with you. Did you have a biopsy on the first cyst or is that why you are going? Not all cysts are cancerous, some are just cysts that require further review. 

  • K93
    K93 Member Posts: 33 Member
    edited October 2020 #3
    Sheila Mc said:

    Cyst on Kidney

    try not to worry, your Nephrologist will discuss your scan results and options with you. Did you have a biopsy on the first cyst or is that why you are going? Not all cysts are cancerous, some are just cysts that require further review. 

    Hi! I did not! I had a doctor

    Hi! I did not! I had a doctor that wanted to remove it, bit got scared. It was a lot smaller. I had cysts on my ovaries at the time, and believed the cyst too would disappear. Here we are. It is still a simple cyst 4 years later. I'm really scared about the whole thing. I'm just a wreck. I'm so scared about seeing a Nephrologist. I don't know what to ask, and what to do. 

  • K93
    K93 Member Posts: 33 Member
    edited October 2020 #4
    Sheila Mc said:

    Cyst on Kidney

    try not to worry, your Nephrologist will discuss your scan results and options with you. Did you have a biopsy on the first cyst or is that why you are going? Not all cysts are cancerous, some are just cysts that require further review. 

    .

    Sorry, I was originally sent to a Nephrologist because if said cyst. My insurance actually denied it. Until I went to the hospital and the cyst grew and the lovely complicated one was found. I feel like that was what got things in motion. 

  • eug91
    eug91 Member Posts: 367 Member
    edited October 2020 #5
    You can do this!

    Hi, k93. Sorry you're going through this, but this is a great message board here. Everyone here has been through a similar experience as yours - we got through it, so we know you can, too! 

    It's perfectly normal to be scared and anxious. Any news like this is going to be shocking and scary, but as Sheila said, not all cysts are cancerous.

    Focus on Wednesday because your nephrologist will be able to give you answers. Consider bringing a notepad with you. Write down your questions for them beforehand, then write down the answers during your appointment. Or if you're like me and can jot questions/notes on your phone, do that. A few questions you can ask-

    -What's the size of the cyst? 

    -What's our next step to determine if it's benign or malignant? Biopsy or another type of scan? 

    Start from there. Write down what the doctor tells you. If you're confused by anything, ask for clarification - if you think of questions later, you can ask us here.

    You can do this. You're gonna do great - we're with you!

     

  • Deanie0916
    Deanie0916 Member Posts: 494 Member
    edited October 2020 #6
    K93 so sorry

    that you are in this position if waiting and worrying. It might help to have another person with you to take notes and be an extra pair of ears for you. Please ask any questions you have we're here for you!

  • AliceB1950
    AliceB1950 Member Posts: 174 Member
    Are the results of the CT

    Are the results of the CT scan posted in your on-line portal? If so, read it carefully and write down any questions you have for the nephrologist. It sounds like you might be prone to having non-cancerous cysts, which is probably annoying and possibly uncomfortable, but not necessarily scary.  Good luck at your appointment.

  • K93
    K93 Member Posts: 33 Member

    Are the results of the CT

    Are the results of the CT scan posted in your on-line portal? If so, read it carefully and write down any questions you have for the nephrologist. It sounds like you might be prone to having non-cancerous cysts, which is probably annoying and possibly uncomfortable, but not necessarily scary.  Good luck at your appointment.

    Hi!

    no, I only know the size of one. The other three were found last Thursday. I have the cd the hospital gave me. I'm familiar with simple cysts, just not "slightly complicated" ones. 

  • K93
    K93 Member Posts: 33 Member
    edited October 2020 #9

    K93 so sorry

    that you are in this position if waiting and worrying. It might help to have another person with you to take notes and be an extra pair of ears for you. Please ask any questions you have we're here for you!

    Hi!

    I do not think anyone would be allowed in the office because of Covid. Doesn't help I'm in an area that was hit sort of bad at the beginning. 

  • K93
    K93 Member Posts: 33 Member
    edited October 2020 #10
    eug91 said:

    You can do this!

    Hi, k93. Sorry you're going through this, but this is a great message board here. Everyone here has been through a similar experience as yours - we got through it, so we know you can, too! 

    It's perfectly normal to be scared and anxious. Any news like this is going to be shocking and scary, but as Sheila said, not all cysts are cancerous.

    Focus on Wednesday because your nephrologist will be able to give you answers. Consider bringing a notepad with you. Write down your questions for them beforehand, then write down the answers during your appointment. Or if you're like me and can jot questions/notes on your phone, do that. A few questions you can ask-

    -What's the size of the cyst? 

    -What's our next step to determine if it's benign or malignant? Biopsy or another type of scan? 

    Start from there. Write down what the doctor tells you. If you're confused by anything, ask for clarification - if you think of questions later, you can ask us here.

    You can do this. You're gonna do great - we're with you!

     

    Thank you so much! 

    Thank you so much! 

  • Deanie0916
    Deanie0916 Member Posts: 494 Member
    K93 said:

    Hi!

    I do not think anyone would be allowed in the office because of Covid. Doesn't help I'm in an area that was hit sort of bad at the beginning. 

    You're right

    That's probably the case. No harm in asking. Maybe record it? Good luck!

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    edited October 2020 #12
    Hi K93.  Things will go fine.

    Hi K93.  Things will go fine.  As you can see by the responses you've gotten, we've all been where you are at some point in our lives.  When my primary care doc first got the results of mt CT scan (done, I think, because I had some microscopic blood in my urine and he likely thought it was a kidney stone), I was in a panic.  I called my sister, a nurse practitioner who, in my obviously biased opinion, is one of the smartest people on the planet.  She got me calmed down and focused.  Then my doc got me a referral to a fantastic urologist at Stanford Hospital in Palo Alto.  He calmed me down completely.

    Some things to remember.  Don't go to Dr. Google.  Much of what you find online is way out of date and some is just plain inaccurate.  Better not to read things at all (speaking from first hand experience.)

    EUG91's advice is really good.  Before your appointment, write down any questions you have.  Then bring either a recorder (sorry, my age is showing) and a writing pad to the appointment to record the conversation and take notes.  I found in my first appointment with the urologist, between my wife and me, we got maybe 75% of what he said.  I probably got about 25% of it while my wife got 50%.  There's just too much going on in your head and with your emotions to get it all.

    Remember that a lot of cysts are benign.  But also remember that the treatment for malignancies in the kidney have come a very long way in the last decade or so.  All of us here are either survivors or loved ones of survivors and there are a LOT of us here.  That should give you a lot of confidence that all will be well.

    We'll be here for you when you get back from your appointment tomorrow and we'll support you the whole way through.

  • Sheila Mc
    Sheila Mc Member Posts: 20
    edited October 2020 #13
    K93 said:

    .

    Sorry, I was originally sent to a Nephrologist because if said cyst. My insurance actually denied it. Until I went to the hospital and the cyst grew and the lovely complicated one was found. I feel like that was what got things in motion. 

    Complicated cyst

    we are here for you, please let us know how your visit goes. 

  • K93
    K93 Member Posts: 33 Member
    edited October 2020 #14

    Hi K93.  Things will go fine.

    Hi K93.  Things will go fine.  As you can see by the responses you've gotten, we've all been where you are at some point in our lives.  When my primary care doc first got the results of mt CT scan (done, I think, because I had some microscopic blood in my urine and he likely thought it was a kidney stone), I was in a panic.  I called my sister, a nurse practitioner who, in my obviously biased opinion, is one of the smartest people on the planet.  She got me calmed down and focused.  Then my doc got me a referral to a fantastic urologist at Stanford Hospital in Palo Alto.  He calmed me down completely.

    Some things to remember.  Don't go to Dr. Google.  Much of what you find online is way out of date and some is just plain inaccurate.  Better not to read things at all (speaking from first hand experience.)

    EUG91's advice is really good.  Before your appointment, write down any questions you have.  Then bring either a recorder (sorry, my age is showing) and a writing pad to the appointment to record the conversation and take notes.  I found in my first appointment with the urologist, between my wife and me, we got maybe 75% of what he said.  I probably got about 25% of it while my wife got 50%.  There's just too much going on in your head and with your emotions to get it all.

    Remember that a lot of cysts are benign.  But also remember that the treatment for malignancies in the kidney have come a very long way in the last decade or so.  All of us here are either survivors or loved ones of survivors and there are a LOT of us here.  That should give you a lot of confidence that all will be well.

    We'll be here for you when you get back from your appointment tomorrow and we'll support you the whole way through.

    Thank you! I was super

    Thank you! I was super nervous even coming here. So I really do appreciate everything from everyone. 

     

    I have really and anxiety, so I'm trying to hard not to Google. :(

  • K93
    K93 Member Posts: 33 Member
    Went today it was super

    Went today it was super interesting. Showed me the cat scan results. He wants me to go in for blood work, another scan, and a urine sample. I mentioned the dreaded c word, and he didn't say anything concerning. I don't know what to think. 

  • Sheila Mc
    Sheila Mc Member Posts: 20
    edited October 2020 #16
    K93 said:

    Went today it was super

    Went today it was super interesting. Showed me the cat scan results. He wants me to go in for blood work, another scan, and a urine sample. I mentioned the dreaded c word, and he didn't say anything concerning. I don't know what to think. 

    Scan and blood work

     Your physician can specify what he wants the radiologist to focus on in a new scan and Bloodwork and urine analysis are important to measure kidney function. Sounds like he is gathering all the facts to make a diagnosis as to why you are developing cysts in your kidney. Keep paper and pen handy and write down all your concerns for your next visit, it will be easier for him to answer once he has all the facts. Try and stay positive, the odds are in your favor. 

     

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    edited October 2020 #17
    Sounds like you had a very

    Sounds like you had a very good appointment.  

  • K93
    K93 Member Posts: 33 Member
    Sheila Mc said:

    Scan and blood work

     Your physician can specify what he wants the radiologist to focus on in a new scan and Bloodwork and urine analysis are important to measure kidney function. Sounds like he is gathering all the facts to make a diagnosis as to why you are developing cysts in your kidney. Keep paper and pen handy and write down all your concerns for your next visit, it will be easier for him to answer once he has all the facts. Try and stay positive, the odds are in your favor. 

     

    He told me it's not common

    He told me it's not common for 27 year olds to get cysts. Right now doesn't think it is PKD, or possibly C. My blood work is all normal. So, I'm curious what will come up in January. Thank you all. 

  • K93
    K93 Member Posts: 33 Member
    edited November 2020 #19
    Sheila Mc said:

    Scan and blood work

     Your physician can specify what he wants the radiologist to focus on in a new scan and Bloodwork and urine analysis are important to measure kidney function. Sounds like he is gathering all the facts to make a diagnosis as to why you are developing cysts in your kidney. Keep paper and pen handy and write down all your concerns for your next visit, it will be easier for him to answer once he has all the facts. Try and stay positive, the odds are in your favor. 

     

    Some days are better than

    Some days are better than others, and I am still so scared. January seems so far away. 

  • K93
    K93 Member Posts: 33 Member
    edited November 2020 #20

    Sounds like you had a very

    Sounds like you had a very good appointment.  

    Ive taken two urinalysis. One

    Ive taken two urinalysis. One has microscopic blood, and, and I had to retest.  The next my primary said was normal. However, when I looked at my results online it said there was trace blood, white blood cells and bacterial. Should I call my Nephrologist?

     

    This lock down has messed with me. I had generalized anxiety before Covid, and it has managed to manifest into health anxiety. All of this isn't helping and I'm scared. 

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    edited November 2020 #21
    K93 said:

    Ive taken two urinalysis. One

    Ive taken two urinalysis. One has microscopic blood, and, and I had to retest.  The next my primary said was normal. However, when I looked at my results online it said there was trace blood, white blood cells and bacterial. Should I call my Nephrologist?

     

    This lock down has messed with me. I had generalized anxiety before Covid, and it has managed to manifest into health anxiety. All of this isn't helping and I'm scared. 

    It can't hurt to call the

    It can't hurt to call the nephrologist.  Peace of mind is a valuable commodity.