Renal complex cyst requires MRI with contrast

Posted by hello1234 @hello1234, Dec 7, 2021

Hi all,
I hope everyone is doing well. On my ultrasound this week, it was discovered that my new transplant kidney has a "complex" cyst. Has anyone been diagnosed with a complex cyst? If so , please share your experience. Did you have a cat scan or MRI to determine if it's cancerous? Your diagnosis and your treatment?
Thanks everyone for any information or experience in this you may have!

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@hello1234

Thank you @gingerw 😊 I appreciate your information and experience with both the MRI contrast and your complex cyst!
I think I am going to need to discuss all the pros and cons with transplant. I am pretty sure that once you have a transplant, they feel confident that your GFR and kidney function can handle the contrast with no adverse effects. But with my recent diagnosis of BK virus and mild calieltasis, the contrast idea is really worrying me.
Thank you again for always being there for me Ginger! I will definitely keep you posted.

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Wow, @hello1234, you are sure going though a lot right now! Thinking of you, and hoping everything works itself out soon so you can relax. Did all of this show up at your two year biopsy appointment? I would definitely ask your tx team about the contrast. In July I had a CT with contrast for the first time in a long time and the ER doc did consult with Mayo. They just had to hydrate before and after. I didn’t have any known side effects, except the expected weird feeling when they inject it. On the complex cyst, if I were in your place I would want to find out if possible. I do know anyone can get simple cysts, but being that it complex I would expect them to be following it carefully. When will they re-test for BK? Please keep us posted about what happens. Do you need to go back to Mayo regarding the cyst?

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@jennifer0726

Wow, @hello1234, you are sure going though a lot right now! Thinking of you, and hoping everything works itself out soon so you can relax. Did all of this show up at your two year biopsy appointment? I would definitely ask your tx team about the contrast. In July I had a CT with contrast for the first time in a long time and the ER doc did consult with Mayo. They just had to hydrate before and after. I didn’t have any known side effects, except the expected weird feeling when they inject it. On the complex cyst, if I were in your place I would want to find out if possible. I do know anyone can get simple cysts, but being that it complex I would expect them to be following it carefully. When will they re-test for BK? Please keep us posted about what happens. Do you need to go back to Mayo regarding the cyst?

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Hi @jennifer0726 😊
Thank you so much for joining in! As usual, you know exactly how I feel.
You are correct, I feel like there is a lot going on right now that I am concerned about. I am feeling a little overwhelmed.
My immune suppression was reduced and I retest for my BK virus load this coming Monday. My last test came back with an increase of double the viral load, so I am praying that next week it stops going in the wrong direction.
My BK was found during my routine lab work before I arrived at my two year anniversary visit. Are you testing for BK virus on a regular basis? I forget if you are on Cellcept and Tacronlimis too?
I also had an ultrasound that showed mild calieltasis of the transplanted kidney. I assume that is caused by the BK virus. (Unfortunately, I didn't catch that note on the ultrasound report until I got home so I didn't have a chance to discuss it.)
The complex cyst is on my native kidney and I agree with you that I need to get it diagnosed. Being on immune suppression increases the chance of cancer so that is always in the back of my mind too.
With a new opportunistic infection like BK, it tells me that my body thinks I am over immune suppressed so a possible malignancy concerns me.
It's so difficult for me to find the perfect cocktail of meds that protects against rejection, but doesn't encourage these infections.
My immune suppression was lowered during my CMV virus, but I guess it was not low enough to prevent my BK virus. Cellcept and Tacronlimis are very effective medications to protect against rejection, but I think for me they may be too powerful, at least at these dosages.
I am curious what meds at what dosage is going to ultimately allow me to live the healthiest life possible.
Thank you again Jennifer for being there for me and for always jumping in to help.

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Hello Hello1234
May I ask what is the size of the complex Cyst on the graft.
I have a simple cyst 1cm with No hydronephrosis but have been told to monitor the size on an annual basis.. and if the size exceeds 2cm, I have told to bring to the attention of Transplant center.. this year US coming up in 3rd week of October... will keep you posted.
Also can you share (optional) what dose is tacrolimus. Thanks & wishing you Best outcome.

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@l0lag0lag0b3

Hello Hello1234
May I ask what is the size of the complex Cyst on the graft.
I have a simple cyst 1cm with No hydronephrosis but have been told to monitor the size on an annual basis.. and if the size exceeds 2cm, I have told to bring to the attention of Transplant center.. this year US coming up in 3rd week of October... will keep you posted.
Also can you share (optional) what dose is tacrolimus. Thanks & wishing you Best outcome.

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Hi @l0lag0lag0b3 😊
It's so nice to talk with you! Thanks for letting me know about the simple cyst you have that is "on watch" for any increase in size.
My renal complex cyst measures 1.8 × 2.0 x 2.1 cm upper pole lesion with multiple septations and questionable solid tissue.
My meds after active CMV was reduced to 500mg bid Cellcept and 6mg Envarsus XR (Tacronlimis) with a blood target between 6 and 8. I take my pills with food so the milligrams may seem higher than what you are taking if you take your Tacronlimis without food.
At this dosage, I developed BK virus so my Cellcept was just reduced to 250mg bid to see if that helps. If not, I think the next move is to remove Cellcept and add 5mg Prednisone. From my reading and discussions with my local nephrologist he would like the Tacronlimis lowered or maybe changed to low dose Cyclosporine or Sirolimus. Tacronlimis is the most powerful.
Boy, there is a real "art" to getting these meds adjusted so not to cause rejection, but avoid or stop the infections. Someone mentioned "Goldilocks" and it's so true!!
I am praying that the reduction of Cellcept does the job. I am going Monday morning for my next blood work...holding my breath!
What meds and dosages are you on currently?

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@hello1234

Hi @l0lag0lag0b3 😊
It's so nice to talk with you! Thanks for letting me know about the simple cyst you have that is "on watch" for any increase in size.
My renal complex cyst measures 1.8 × 2.0 x 2.1 cm upper pole lesion with multiple septations and questionable solid tissue.
My meds after active CMV was reduced to 500mg bid Cellcept and 6mg Envarsus XR (Tacronlimis) with a blood target between 6 and 8. I take my pills with food so the milligrams may seem higher than what you are taking if you take your Tacronlimis without food.
At this dosage, I developed BK virus so my Cellcept was just reduced to 250mg bid to see if that helps. If not, I think the next move is to remove Cellcept and add 5mg Prednisone. From my reading and discussions with my local nephrologist he would like the Tacronlimis lowered or maybe changed to low dose Cyclosporine or Sirolimus. Tacronlimis is the most powerful.
Boy, there is a real "art" to getting these meds adjusted so not to cause rejection, but avoid or stop the infections. Someone mentioned "Goldilocks" and it's so true!!
I am praying that the reduction of Cellcept does the job. I am going Monday morning for my next blood work...holding my breath!
What meds and dosages are you on currently?

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Hello @hello1234
Good to hear from you,
My Current Dosages/day: 1.5mg of Tacro, 1000 of Mycophenolate & 5mg Prednisone.
Tacro range: 4 to 7
Tacrolimus has been the main stay proven over years in preventing rejection, so in my case most probably - reducing the Tacro any further is unforeseeable in the future and I look at it as a maintenance dose.

Mycophenolate has impact on the WBC count (& the associated attributes within the WBC umbrella) typically if you develop an infection the Mycophenolate dose is reduced to boost the WBC effectively to fight the infection.
Looks like you are the right track, Good Luck and keep us in the loop.

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@l0lag0lag0b3
Wow, you are unbelievably knowledgeable! I can't tell you how much I appreciate your post regarding the role that Mycophenolate plays in our cocktail of meds.
It's very comforting to have the information you provided! I feel like I am always trying to patchwork my knowledge using little bits of information from my local doctor, the internet, etc.
You provided me a very clear (and very comforting!) explanation on why the transplant team would lower the MMF instead of the Tacronlimis. When did you receive your kidney transplant? Your knowledge is amazing.

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