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Complex cyst question

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Hello,

I have had a complex cyst in my left kidney that has been watched for about 4 years, my last MRI was October of last year, so I'm due for another scan within the next few months.

The MRI report from last year stated: Multilobulated 4.5 x 3.6 cm cyst in the upper pole left kidney with a couple of thin internal septations. No solid nodularity. No thickened septations. Finding is stable in size when compared to previous.

 The kidney specialist that I saw at Northwestern said that the cyst is actually "in" my kidney, not "on" it, which makes removal more difficult and also he felt that it looked benign, but should be watched.  I did get a second opinion at the Mayo Clinic in Minnesota and they agreed and even said that this time I can do surveillance with ultrasound instead of MRI.  

I had a prophylactic double mastectomy last year due to genetics, and a bunch of pre-cancerous cells were found that never showed on any screenings.  I have PALB2, ATM and PTEN mutations, and I believe it's the PALB2 that raises my risk for renal cancer.  

I thought I had a bladder infection starting a few days ago, feeling some urgency, burning and crampy pain on the left side of my back that radiates at times to my groin.  I went to my gynecologist who did a urinalysis and put me on antibiotics to be safe, and she just called and said my urine was negative for everything, and to stop taking the antibiotics.  She is aware of the kidney cyst and said to call my internal med doctor to order a scan to be sure all is ok.  

His office is closed today (of course), and I'm just trying to not go to a bad place with my anxiety!  Since there was no blood in my urine, that is a good sign, hopefully?  And a cyst that size of mine really shouldn't cause pain?  

 

 

 

eug91's picture
eug91
Posts: 125
Joined: Jan 2019

I don't have any answers for you, but all of us totally understand and relate to the anxiety. Every ache and pain causes your mind to go immediately to a worst-case-scenario. 

Hopefully your doctor will have good news for you. Good luck!

icemantoo's picture
icemantoo
Posts: 3198
Joined: Jan 2010

Suki,

 

It would be inappropriate   for me to weigh in on the opinions you already have from Mayo and Northwestern. It is still small enough to deal with, with a near 100%  full covery should they ever need to deal with it. You are in good hands. I would follow uo with one of the Uro's as well. Sending good Karma.

 

 

 

 

 

 

icemantoo                                               

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Thanks for the kind responses!  I have already spoken with my doctor's office and a scan is in the works! 

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Waiting to hear from my doctor and will also fax my report to the doctor at Mayo Clinic, the complex cyst has grown to 5.5 cm and the shape is more irregular. I’m thinking surgery may be in my near future. 

APny's picture
APny
Posts: 1915
Joined: Mar 2014

Even a benign cyst can cause symptoms. Most likely your doc will advise that it should come out. I'm sorry you're facing this but hopefully it'll turn out to be benign and that'll be the end of it. All the best to you! The waiting and anxiety totally suck.

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Thans APny, I'm curious to see what the doctor at Mayo has to say about the size of this thing.   I think way back in 2012 it was first seen and was around 2.6cm, and now is up to 5.6,(the tech had said 5.5, but the report says 5.6cm)  so very slow growth, but growth nonetheless. 

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Also, I’m wondering where the current best hospital for kidney surgery is, I’m within driving distance of both Mayo Clinic in Rochester, and the Cleveland Clinic. 

Jan4you's picture
Jan4you
Posts: 1310
Joined: Oct 2013

Oh dear, I can appreciate your concern and worry. Use your faith to guide you to the best surgeon. You're in Chicago area, right? So there must be good Urologists who do this kind of surgery, right?

Sounds like it was first identified as a cyst and now its not?

Keep us posted. We will be her for you all the way~

Healing hugs, 

Jan

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Hi,

I had this checked out by the Mayo Clinic in Rochester about 2.5 years ago and they'd like me to come back to see them, so I'm going! Thanks for the kind response. :) 

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