Complex kidney cyst in a child?

J23232
J23232 Member Posts: 3
in Kidney Cancer #1

Hi all, I hope it is ok to post here, but I found this site when searching for info about complex renal cysts. My child has an approximately 1cm complex cyst on his kidney with one or two "areas of septation." It is thin septation but report doesn't say how thin (ie paper thin). The urologist said they don't use Bosniak classification in children (is this true?) so I do not know where it would fall on the scale and am very confused about how common a complex cyst in a child is, what are the chances of malignancy now or in the future, etc.

We are waiting on an MRI to be scheduled.

The nephrologist said he has never seen one in a child before. The urologist thought it was a simple cyst looking at the ultrasound himself but when he asked a different radiologist it was called complex and MRI recommended. Urologist still seems very non-concerned. Everything we read online points us to being very concerned, though. However, very little information seems to be available on these cysts in children.

Very concerned about the possibility of RCC.

Would appreciate any info, advice or others' experiences with this type of cyst, especially in children. Thanks very much.

Comments

  • sblairc
    sblairc Member Posts: 585 Member
    #2
    Welcome! Everyone here is so supportive and informative

    Hi! I'm relatively new to the forum but wanted to welcome you and say hello. I'm sure someone with more information will post to help you with your questions but I just wanted to say welcome. This is a great place to post questions and get advice and resources. 

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #3
    sblairc said:

    Welcome! Everyone here is so supportive and informative

    Hi! I'm relatively new to the forum but wanted to welcome you and say hello. I'm sure someone with more information will post to help you with your questions but I just wanted to say welcome. This is a great place to post questions and get advice and resources. 

    Seek expert opinion

    I have not seen this question raised in the 5 years I have been pn this board. Definately seek an opinion from a teaching hospital or university where they address concerns out of the ordinary. Even inquire with a large children's hospital.

     

     

    Icemantoo

  • angec
    angec Member Posts: 924 Member
    #4
    Hello, i wanted to share a

    Hello, i wanted to share a good sight to post this question on. www.Smartpatients.com..... they have a lot of expertise there. Good thing is that 1 cm is very small and caught very early, whatever it is.  Are they sure he doesn't have a kidney infection? Sounds like a stupid question, but i have seen before where that has happened.  How did they catch this, did the child have blood in urine?  I also would seek a good children's hospital for this.  St. Judes, Childrens Miracle network etc.  

    Hope all turns out ok.  Keep on top of it, at the least scan every three months but if it is definitely a cyst they should remove it.  Please keep us posted..

     

     

  • GSRon
    GSRon Member Posts: 1,303 Member
    #5
    angec said:

    Hello, i wanted to share a

    Hello, i wanted to share a good sight to post this question on. www.Smartpatients.com..... they have a lot of expertise there. Good thing is that 1 cm is very small and caught very early, whatever it is.  Are they sure he doesn't have a kidney infection? Sounds like a stupid question, but i have seen before where that has happened.  How did they catch this, did the child have blood in urine?  I also would seek a good children's hospital for this.  St. Judes, Childrens Miracle network etc.  

    Hope all turns out ok.  Keep on top of it, at the least scan every three months but if it is definitely a cyst they should remove it.  Please keep us posted..

     

     

    I agree with all of the

    I agree with all of the above.. but if you tell us where you are, we may offer suggestions where to check out.  So, in Northern California, we have Stanford, and they have a separate facility Lucile Packard Children's Hospital...  http://www.stanfordchildrens.org/   There are only a few similar type hospitals around.. hope there is one near you...

    Ron

  • J23232
    J23232 Member Posts: 3
    #6
    angec said:

    Hello, i wanted to share a

    Hello, i wanted to share a good sight to post this question on. www.Smartpatients.com..... they have a lot of expertise there. Good thing is that 1 cm is very small and caught very early, whatever it is.  Are they sure he doesn't have a kidney infection? Sounds like a stupid question, but i have seen before where that has happened.  How did they catch this, did the child have blood in urine?  I also would seek a good children's hospital for this.  St. Judes, Childrens Miracle network etc.  

    Hope all turns out ok.  Keep on top of it, at the least scan every three months but if it is definitely a cyst they should remove it.  Please keep us posted..

     

     

    Thanks all!
     
    Can you explain

    Thanks all!

     

    Can you explain more about the definite need to remove it if it's definitely a cyst? Can a complex cyst not stay the same for many years harmless? The radiologist said if they had to give it a Bosniak classification, it would be a II or IIF. They said it will likely just need follow up imaging, ie serial ultrasounds.

     

    We are very concerned as I can find no info on the chances of it changing over time.

     

    He had gross terminal hematuria for about five days which is why he had the u/s. The specialists both said the hematuria can't be related to kidney because it only came out at the end which points to bladder or prostate etc, but not kidneys.

     

    Location is Michigan. MRI coming up soon.

     

     

  • angec
    angec Member Posts: 924 Member
    #7
    J23232 said:

    Thanks all!
     
    Can you explain

    Thanks all!

     

    Can you explain more about the definite need to remove it if it's definitely a cyst? Can a complex cyst not stay the same for many years harmless? The radiologist said if they had to give it a Bosniak classification, it would be a II or IIF. They said it will likely just need follow up imaging, ie serial ultrasounds.

     

    We are very concerned as I can find no info on the chances of it changing over time.

     

    He had gross terminal hematuria for about five days which is why he had the u/s. The specialists both said the hematuria can't be related to kidney because it only came out at the end which points to bladder or prostate etc, but not kidneys.

     

    Location is Michigan. MRI coming up soon.

     

     

    Did they triple check him for

    Did they triple check him for an infection? What made the hematura stop?  Please keep us posted.  Hoping all goes well. Were you able to post your question on www.smartpatients.com?

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #8
    Michigan

    J23232,

     

    I am also from Michigan. Chiddren's Hospital in Detroit is affiliated with Wayne State University Hospital. Also there is the University of Michigan Hospital in Ann Arbor and Mott Childrens Hospital in Flint. Definately an unusual diagnosis. In an adult a cyst of that size is very small and would often be treated with a wait and see approach. Many adults have cysts on their Kidney that do not grow and do not turn into RCC. How old is your child?

     

    Icemantoo

  • J23232
    J23232 Member Posts: 3
    #9
    icemantoo said:

    Michigan

    J23232,

     

    I am also from Michigan. Chiddren's Hospital in Detroit is affiliated with Wayne State University Hospital. Also there is the University of Michigan Hospital in Ann Arbor and Mott Childrens Hospital in Flint. Definately an unusual diagnosis. In an adult a cyst of that size is very small and would often be treated with a wait and see approach. Many adults have cysts on their Kidney that do not grow and do not turn into RCC. How old is your child?

     

    Icemantoo

    Thanks all. I did post to

    Thanks all. I did post to smartpatients today. The hematuria stopped after about 5 days, for no apparent reason. Both pediatric urologists we've seen believe it is unrelated to the cyst and was probably due to some irritation from holding his pee too long or constipation, etc. Because it was terminal hematuria they said it can't be from the kidney.

     

    His MRI is scheduled this week and we are having second thoughts. We saw the second pediatric urologist at a different hospital last week and he said that the results of the MRI would be very unlikely to change his plan of just following it with serial ultrasounds to check for any change, so he does not believe the MRI is necessary. We are concerned about the risks of contrast and sedation (if sedation is needed) so we are considering taking the advice to do another u/s in 2 months. The first pediatric urologist was not concerned either and said MRI or not was up to us but that the radiologist did recommend it. Very confused.

     

    One thing the second urologist said was that there is no harm in waiting 2 months and doing another u/s (versus MRI now), because if it were cancer it would change by the next u/s and then we could do an MRI, and if it were cancer and did change it wouldn't change so much that it would do any harm by waiting that amount of time. ?

     

    Is there a chance it could spread in that time frame though?

     

    If it did not show any change on the next ultrasound, would there still be a chance it could be cancer?

     

    Does anyone know how often these type of cysts change over time?

  • angec
    angec Member Posts: 924 Member
    #10
    J23232 said:

    Thanks all. I did post to

    Thanks all. I did post to smartpatients today. The hematuria stopped after about 5 days, for no apparent reason. Both pediatric urologists we've seen believe it is unrelated to the cyst and was probably due to some irritation from holding his pee too long or constipation, etc. Because it was terminal hematuria they said it can't be from the kidney.

     

    His MRI is scheduled this week and we are having second thoughts. We saw the second pediatric urologist at a different hospital last week and he said that the results of the MRI would be very unlikely to change his plan of just following it with serial ultrasounds to check for any change, so he does not believe the MRI is necessary. We are concerned about the risks of contrast and sedation (if sedation is needed) so we are considering taking the advice to do another u/s in 2 months. The first pediatric urologist was not concerned either and said MRI or not was up to us but that the radiologist did recommend it. Very confused.

     

    One thing the second urologist said was that there is no harm in waiting 2 months and doing another u/s (versus MRI now), because if it were cancer it would change by the next u/s and then we could do an MRI, and if it were cancer and did change it wouldn't change so much that it would do any harm by waiting that amount of time. ?

     

    Is there a chance it could spread in that time frame though?

     

    If it did not show any change on the next ultrasound, would there still be a chance it could be cancer?

     

    Does anyone know how often these type of cysts change over time?

    This is just my opinion.  It

    This is just my opinion.  It would not hurt to get the MRI now.  If the radiologist said to get it, i would get it. The reason is that two months can make a big difference.  You want to know now what is happening with the cyst.  Blood in urine is a tell tale sign, although they are pushing it aside.  Let them take the mri now to check the kidney. Any cancer can spread in two months, if you have no idea what it is, then you don't know how fast it can spread or what a difference two months can be. They can use low dose radiation, and most probably won't have to put him to sleep.  How old is the child?  On the other hand, if it is nothing two months won't make a big difference.  But you will have to get the mri either way so what difference does it make if it is now or later. Do it now, mom.  This is the best option. You need to find out what it is.  The earlier the better.  Just my opinion.  Praying all goes well!

  • sblairc
    sblairc Member Posts: 585 Member
    #11
    No experience, just mothers intuition on this one

    If it was me, I'd get the MRI. I don't understand the difference between types of hemeturia, but with renal cysts and hematuria co-occuring, I'd think getting an MRI would be appropriate. Perhaps there are other health issues that make getting an MRI difficult (you mention the possibility of sedation) but I think waiting two months would make me crazy (as a mom). Good luck, thinking positive thoughs for you. 

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