Complex Renal Cyst...Questions

james_2003
james_2003 Member Posts: 4
in Kidney Cancer #1

I had a CT w/ contrast preformed about six months ago, which showed what they called a complex renal cyst in the upper portion of what remains of my left kidney. It showed several septations and calcifications, and measured around 4.6 cm. I got a call from the nurse, following the CT, stating that my urologist wanted to schedule for a follow-up visit and ultrasound in one year (which leaves about 6 months to go). 

A brief history (I will try to keep to a minimum)...I have dealt with kidney problems, and have underwent many surgeries over my lifetime (some major, & some minor). In 2008, it was discovered that the entire upper pole of my left kidney had calcified.  Due to the extensive nephrocalcinosis, my urologist performed an open partial nephrectomy in December of that year.  I had several years with only minimal issues after the partial nephrectomy was performed.

About 3 years ago, I started having more complications, and would have a CT done about every six months to "watch". I, again, have nephrocalcinosis (where the actual kidney, itsself, calcifies). Only, this time, it is happening in both kidneys. I show dialated calyx in both kidneys, with only a simple cyst in my "good" (right) kidney. However, they found the hypodense complex cyst (mentioned above), in my left (partial) kidney. 

The urologist I grew up with, who has performed all of my kidney related surgeries, recently retired. I have only, briefly, met my new urologist once. I have complete faith in him, and his team; however, this complex cyst is really scaring me. It causes me daily pain, & I have had blood in my urine (on & off) for around 9 months now. 

Has anyone dealt with a similar situation? Can you shed some light on this for me? I am sure I am probably worrying for nothing, but I am a young mother, & I just don't want to let this go too long, if it could be malignant. 

Any replies would be GREATLY appreciated! Thank you in advance! (And, I am sorry for rambling on!!) :-)

Comments

  • foroughsh
    foroughsh Member Posts: 779 Member
    #2
    Welcome to this board where

    Welcome to this board where no one on their right mind wants to join. Your situation is really complex and sure beyond my knowledge. But for ordinary people who have complex cyst in their kidney it's not such a good news as more than 80℅ of complex cysts turn out to be malignant. Because of such high number and the risk of tumor spread they prefer not to do biopsy on kidney tumors and directly do the nephrectomy to take it out and then check what it was. It's always good to have second opinion even if you trust your doctor completely. Bleeding blood and flank pain are symptoms you should take seriously. Even if it turns out to be malignant a 4 cm tomur is stage one and the patient has a great chance of getting cure by nephrectomy but it's very important to take it out before anything bad happens. I don't want to stress you out but it's good to be vigilant.

    Wishing you all the best

    Forough

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #3
    My thoughts

    james_2003.

    A complex 4.6 cm cyst sounds to me a little dicey to wait and see for another year. I would get a second opinion.

     

    Icemantoo

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    edited December 2016 #4
    It really depends on how complex the cyst is

    I have a complex cyst too, please read my profile.

    If the ultrasound shows thick septations or wall; they will recommend you to do a CT scan w/wo contrast to categorize the cyst according to the Bosinak scale. Then the urologist will decide on the management plan for you. Don't worry at the moment even though more than 80% of Category IV cyst is malignant, only less than 3% of Category II cyst is malignant.

    If it is just thin septations, yours might just be category II/IIF. Like what Iceman mentioned, I will get a second opinion as well. The link below explains the management of cystic mass. Hope this help.

    Guidelines on the management of renal cyst disease

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #5
    Hello and welcome.

    Hello and welcome.

    I don't have much input in regard to your situation, however I believe one year is too long to wait for a scan. I would call and explain that you are still having blood in your urine and that you really would like to have it checked now. A second opinion never hurts!!

    Hugs

    Jojo

  • james_2003
    james_2003 Member Posts: 4
    edited December 2016 #6
    I want to thank all of you

    I want to thank all of you for your input/thoughts. It means a lot! I have been thinking about getting a second opinion for some time now, but money is tight right now, and I didn't want to pay another doctor a fee to become established only to be told the same thing. However, after hearing from all of you, I do believe I will call another urology office tomorrow to set up an appointment for a second opinion.  The whole situation scares me. Praying for the best. :-) Thanks, again!

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #7
    Perhaps you should ask your

    Perhaps you should ask your current urologist again regarding the CT result you had and what  Bosniak category the cyst falls into. There are guidelines in US/Canada for treating cystic renal mass. If the cyst is only I or II, some might not even do follow ups. If it is IIF, they will do follow ups periodically to track any changes (the F stands for follow up). If it is III and is smaller than 3 cm, they might do follow ups every 3 months. So if your cyst is II or IIF, that might be the reason they schedule the follow up after a year. You should get a copy of the CT scan report and the CT scan images (CD), so you can bring them to the new urologist for a quick second opinion.

    Good luck!

  • hardo718
    hardo718 Member Posts: 853 Member
    edited December 2016 #8
    Welcome!

    As others have suggested, I too would get another opinion or at least start pushing for your appointment to be moved up, especially since you live with daily pain and frequency of blood in your urine.  Be sure to get copies of your scans so in the event you decide to go elsewhere for another opinion you are armed with the information that doctor will need.

    Best wishes and keep us posted,

    Donna~

  • james_2003
    james_2003 Member Posts: 4
    edited December 2016 #9
    I do have copies of my scans

    I do have copies of my scans/reports. From what I see on the radiologist's report of my last scan, I think (I am no doctor, of course) that mine would classify as either a IIF or a III. It is greater than 3cm. 6 months ago, it was at 4.6 cm. Looking at past scans, it seems slow growing, but is changing in other ways (more septations & calcifications). I try to keep positive that my new urologist is very well trained, and knows what he is doing...however, the anxiety really gets to me sometimes. Especially when I see the blood, and when the pain gets really bad (most days it is simply a dull ache with sparatic sharp pains).

  • todd121
    todd121 Member Posts: 1,448 Member
    edited December 2016 #10
    Find another specialist - maybe 2

    I'd get another opinion maybe a third if the first two don't agree. I'd try to find a urologic oncologist. These are urologists with special training for kidney masses of all kinds. The best would be to find one at a national cancer center or university research hospital.

    I'd do this now and not wait a year. When they found my large complex cyst, my urologic oncologist told me that about 90% of these are malignant and I've heard that a few times now. The don't usually do biopsies, but this might be a case where it might be worth it. (False negatives are a problem with biopsies, among others. They usually recommend removing the mass through partial/radical nephrectomy and wait for pathology to determine what it is).

    Hope this helps. Sorry you're having these issues.

    Best wishes,

    Todd

  • james_2003
    james_2003 Member Posts: 4
    #11
    Appointment made for 2nd opinion

    Thank you, again, for all of the input and suggestions.  I have an appointment set for about 2.5 weeks from now, to get a second opinion.  I will have my scans/reports in hand, along with a list of questions for the urologist. 

    Any suggestions on specific questions I should be asking?

    Thank you, everyone! You have all been amazing! Laughing

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