Complex kidney lesion
Hi, I have two mutations that predispose me to different cancers, and I have a complex kidney cystic lesion that they've been "watching" for a few years. It has grown and become more septated, I just had an MRI last week, and it's now 5cm x 4.5cm, and within my upper right kidney, going all the way into the collection system, but my kidney function continues to be ok. I'm wondering if anyone else has had something similar size/complexity wise and how they're doing. I'm having a virtual visit next week with my kidney doctor at Mayo in Rochester, and I was expecting just a message saying to keep up with watching and have another MRI next year, so I can't help but think they might want to do something about it this time!
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@suki1724 the good news is that you are in the best possible hands. Like @gingerw indicated, it’s a good idea to keep track of your eGFR. You might also want to follow your blood lab results especially creatinine and uric acid. As you watch your test result levels, you can see if what you’re doing is working well. Additionally, the doctors and nurses have good advice on how to manage your condition.
The sun ☀️ is shining this morning.
Hi Ginger, my eGFR is 72 and my creatinine is .91 as of December of last year, which is the last time they checked. I went back and looked at my older bloodwork and my eGFR was 114 a few years ago, so will definitely be asking about that. They didn't check before my MRI with contrast at University of Wisconsin, Madison, so it would have been nice to know, I'm hoping the Mayo Doctors will order blood work on Thursday. I'm confused about the eGFR, I was seeing over 90 is normal, and then over 60? Maybe it depends on age?
@suki1724 Yes, a person's eGFR naturally declines as we age, some faster than others due to genetics, disease or lifestyle. Typically, an MRI with contrast or CT with contrast, should not be considered if function is about 30% or less.
To let you know, my nephrologist and I decided I will go to get an opinion from a urologist about the lesion on my right kidney.
Ginger
Ginger, best of luck on your consult with the urologist, please keep me posted!
All the best with your appointment on Thursday, @suki1724. I look forward to hearing what you learn.
Thanks so much, I'm busy making notes and gathering info!
Visit update:, in spite of the kidney lesion growing a centimeter and a half since my last MRI, they just still want to watch it. It's now about 6cm and too large for ablation and probably biopsy, which wasn't exactly what I had hoped to hear. It is still considered a Bosniak 2f lesion until imaging shows otherwise, so it looks like I'm stuck with the little bugger for now. I will also be doing a GI consult because I have a complex cyst on my liver that will be looked into a little further, so I'm waiting to hear from them about that appointment. Thanks for all the encouragement and helpful responses, this is a wonderful group.
@suki1724 Thank you for letting us know what the dr had to say. Are you comfortable with their thoughts on this? Might they consider combining protocols for treating both cysts into one procedure?
Ginger
The liver cyst is “only” about 3cm, and they may do nothing about it, but I’m definitely looking forward to hearing from the GI doctors. They were pretty firm on leaving the kidney lesion alone for now, so time will tell I guess? And maybe the GI doctors might weigh in on everything. I have a bad gallbladder too, I was scheduled to have it removed right at the beginning of the pandemic shutdown, at University of Chicago, and it was canceled, so maybe they can at least take a better look at things if they’re in there taking the gallbladder? I’m wiped out from thinking about all of this but grateful that I’m in good hands.
another update, I just got my bloodwork back from yesterday and my eGFR is now 65, down from 72 at the end of December. I sent a copy to the urology department at Mayo Clinic, so we'll see what they have to say, if anything