Complex kidney lesion

Posted by suki1724 @suki1724, Apr 16 4:08pm

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!

@suki1724 Welcome to Mayo Clinic Connect, a place to give and get support.

It sounds like you have a kidney specialist and they have been monitoring the situation for some time. Even with that it is understandable that you still have concerns.

Members @vivianwaters @jolinda @veteran1950 @ryman @bwardccrn @kitmus @jeanne5009 @kitmus @lagrange5 @gladiator14 @anet @mariburr123 have discussed kidneys in past discussions and may be able to offer support.

I'm wondering if you have a particular questions that you plan to ask at your virtual appointment?

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@erikas

@suki1724 Welcome to Mayo Clinic Connect, a place to give and get support.

It sounds like you have a kidney specialist and they have been monitoring the situation for some time. Even with that it is understandable that you still have concerns.

Members @vivianwaters @jolinda @veteran1950 @ryman @bwardccrn @kitmus @jeanne5009 @kitmus @lagrange5 @gladiator14 @anet @mariburr123 have discussed kidneys in past discussions and may be able to offer support.

I'm wondering if you have a particular questions that you plan to ask at your virtual appointment?

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Hi, thanks for the response! I have a few questions that I'll be asking, I'm concerned that the lesion is still growing and would like to know if they are going to something besides watching it, I'm wondering about a biopsy and also about ablation, but not sure because of the size. I'm also having some issues with retaining water just recently and I'm wondering if the increase in the size of the lesion could be contributing to that?

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Hello @suki1724

Last year I had a very helpful telemedicine visit with my Mayo Rochester nephrologist. He previously found the cause of my renal issue, and I have been following up with him for about 10 years. My experience with the entire nephrology department has been consistently positive.

I found it useful to write down all of my questions and possible follow-up questions in advance of the telemedicine visit. You might find it useful to focus on issues like diet, prescription drug interactions, new medications, and changes in your daily routine. Even though you may already have been successfully managing all of these things, it’s always good to insure that you’re continuing on the right track or to see if you need to make any adjustments.

Finally, be sure that you have your computer equipment properly set up and that you will be properly connected to Mayo for the telemedicine visit so as to avoid any glitches at the actual appointment time.

I hope you find this helpful.

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@suki1724 Welcome to Mayo Connect! I also was just diagnosed with a lesion in my right kidney, as they were doing MRIs on my back. This week they did a CT scan and confirmed it. I am waiting to hear from my nephrologist if we will monitor it, or do a biopsy and ablation. Kinda sounds like your situation, doesn't it? My kidney function is at 25%, so we take things very carefully. Your lesion is about twice the size of mine. Have they given you the Hounsfeld unit number [denseness of the lesion]?

Just as @lagrange5 mentioned, write all your questions down. Do you have the progression of the lesion over time written down? I hope you will come back and tell us what they decide.
Ginger

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@lagrange5

Hello @suki1724

Last year I had a very helpful telemedicine visit with my Mayo Rochester nephrologist. He previously found the cause of my renal issue, and I have been following up with him for about 10 years. My experience with the entire nephrology department has been consistently positive.

I found it useful to write down all of my questions and possible follow-up questions in advance of the telemedicine visit. You might find it useful to focus on issues like diet, prescription drug interactions, new medications, and changes in your daily routine. Even though you may already have been successfully managing all of these things, it’s always good to insure that you’re continuing on the right track or to see if you need to make any adjustments.

Finally, be sure that you have your computer equipment properly set up and that you will be properly connected to Mayo for the telemedicine visit so as to avoid any glitches at the actual appointment time.

I hope you find this helpful.

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Hi, it's so helpful to know that you've been having positive experiences for 10 years, that is impressive and definitely makes me feel good about being with the doctors that I've been seeing in Rochester. Thanks for the response and helpful info.

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@gingerw

@suki1724 Welcome to Mayo Connect! I also was just diagnosed with a lesion in my right kidney, as they were doing MRIs on my back. This week they did a CT scan and confirmed it. I am waiting to hear from my nephrologist if we will monitor it, or do a biopsy and ablation. Kinda sounds like your situation, doesn't it? My kidney function is at 25%, so we take things very carefully. Your lesion is about twice the size of mine. Have they given you the Hounsfeld unit number [denseness of the lesion]?

Just as @lagrange5 mentioned, write all your questions down. Do you have the progression of the lesion over time written down? I hope you will come back and tell us what they decide.
Ginger

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Hi! I've never heard about a Hounsfeld unit number, so I will definitely add that to my list of questions! The only thing I know is that I've been at a Bosniak 2F for every scan, and I'm curious if the recent growth has caused a progression to Bosniak 3. Wishing you all the best and hope your nephrologist comes up with a good plan for you. Please keep me posted.

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Update, I sent my MRI images to Mayo in MN and they have increased the size of the lesion to almost 6cm, and the new report says that there are enhancing septations. I specifically asked about anything enhancing at the non-Mayo clinic doctor I saw and she said they didn't see any. Wow, what a difference.

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@suki1724

Update, I sent my MRI images to Mayo in MN and they have increased the size of the lesion to almost 6cm, and the new report says that there are enhancing septations. I specifically asked about anything enhancing at the non-Mayo clinic doctor I saw and she said they didn't see any. Wow, what a difference.

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@suki1724 Deep breath! And take another one. Some imaging centers may not be equipped by machinery or personnel, to give you good/consistent diagnostics. I have had my share of them. My oncologist and nephrologist are two hrs away. The imaging center they like is right near them, but it takes too much out of me to go two hrs up for imaging, then return home. So I use one that is an hour away. What is important is that you have confidence in the knowledge your specialist at Mayo has for you. Keep a journal including any symptoms you are showing, conversations with your medical team, etc.
Ginger

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@gingerw

@suki1724 Deep breath! And take another one. Some imaging centers may not be equipped by machinery or personnel, to give you good/consistent diagnostics. I have had my share of them. My oncologist and nephrologist are two hrs away. The imaging center they like is right near them, but it takes too much out of me to go two hrs up for imaging, then return home. So I use one that is an hour away. What is important is that you have confidence in the knowledge your specialist at Mayo has for you. Keep a journal including any symptoms you are showing, conversations with your medical team, etc.
Ginger

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Ginger, thank you. I am so glad that I sent those images to the doctors at Mayo Clinic, feeling relieved that I'm in the best hands possible with them. I'm very much looking forward to my appointment on Thursday to see what they have to say.

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@suki1724

Ginger, thank you. I am so glad that I sent those images to the doctors at Mayo Clinic, feeling relieved that I'm in the best hands possible with them. I'm very much looking forward to my appointment on Thursday to see what they have to say.

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@suki1724 I have a tendency to script things out, thinking of all the possibilities I can. I am not one for surprises. And although some drs may not like it, I do a lot of research ahead of time when I can, to be prepared. Don't fret. Drink a cuppa beverage of your choice. Snuggle with a pet if you have one. Have faith in your Mayo dr. I am curious what your eGFR is reading these days?
Ginger

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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.

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@gingerw

@suki1724 I have a tendency to script things out, thinking of all the possibilities I can. I am not one for surprises. And although some drs may not like it, I do a lot of research ahead of time when I can, to be prepared. Don't fret. Drink a cuppa beverage of your choice. Snuggle with a pet if you have one. Have faith in your Mayo dr. I am curious what your eGFR is reading these days?
Ginger

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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?

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