Can minimally complex kidney cysts become polycystic kidney disease?

Welcome to Connect, @rshardi. Thank you for sharing your diagnosis and reaching out to the Connect community.

According to this Mayo Clinic webpage, for polycystic kidney disease, certain tests can detect the size and number of kidney cysts you have and evaluate the amount of healthy kidney tissue. You can read more about bout kidney cysts and polycystic kidney disease, here:
– https://www.mayoclinic.org/diseases-conditions/kidney-cysts/basics/definition/con-20035205
– https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820

I’m bringing @pkindron @trishanna @kewpie8484 @predictable @lcamino @upnorthnancy into this conversation, since I think they may have some related experiences with kidney cysts. You might also be interested in reading these discussions:
– CYST ON KIDNEYS https://connect.mayoclinic.org/discussion/cyst-on-kidneys/
– Kidney renal mass biopsy https://connect.mayoclinic.org/discussion/kidney-renal-mass-biopsy

We look forward to getting to know you better, @rshardi. May I ask if you had any symptoms that led to the discovery of the kidney cysts?

@rshardi - Hi! My name is Lynn and I have PKD. I have never heard of minimally complex kidney cysts so I'm afraid I can't shed too much light on your question. I do know that when my daughter received a diagnosis of an autoimmune disorder I read a book recommended by the doctor and at each appointment I would go in and ask. "Why is her diagnosis not this? Why did you not do this blood test?" etc. I trusted the doctor's answer but was simply trying to understand how she ruled out other another diagnosis. I say all this to illustrate that I recommend you ask the doctor that diagnosed you or your current nephrologist. If you are not able to get a satisfactory answer then I would seek a second opinion. I can tell you that PKD is 90% genetic but 10% of people develop the disease by a mutating gene so you can't assume that no family history means you don't have PKD.

In short, ask questions until you are satisfied with the answers. It is you body and your health and you need to understand so you can take control of your care. Best of luck!

Lynn

Back in May, I had bad stomach pain and nausea that did not go away. We were going to go out of town the next day. Around midnight I went to the emergency room of our local small hospital. A CT scan confirmed appendicitis and a 12 mm adrenal nodule, a 5mm pancreatic spot, and kidney cysts. I was transferred to a larger hospital for an appendectomy. In July I had a UtI with blood in my urine. I was referred to a urologist. He ordered an MRI and confirmed the cysts as minimally complex with a follow up MRI in one year.

@rshardi - I do know that many people have several cysts on their kidneys and that is not necessarily a diagnosis for PKD. In fact, many people might have cysts and not know it unless they have imaging for another issue and the cysts are noticed. You can still contact the urologist (probably the nurse) and ask some questions or, better yet, make an appointment and talk to the doctor directly. You could also see a nephrologist and get an opinion from that specialist. If you have questions I would not wait a year - too long to worry in my book.

Lynn

Thanks Lynn. I go for my follow up on the 31st.

@rshardi - Great to hear! I thought you had an appointment in a year. I always go to a doctor's visit with a list of questions and a pen to write down the answers because the information can be overwhelming and hard to remember once I get home and try to repeat everything I learned to my husband.

Lynn

Good idea. I have not seen the urologist since the MRI. The info that I got, came from my request for info on my MRI that he answered in an e-mail message through "My Chart" app. Hope to have more complete info from my follow up appointment on the 31st.