CSN Login
Members Online: 2

You are here

New here

K93
Posts: 19
Joined: Oct 2020

I'm new here, so bare with me. I'm not super tech savvy. 

 

Last week I was in the hospital for a bowel obstruction. Had a cat scan with contrast done, and it found cysts on my kindeys. One I was aware of, and in the process of getting a referral to see a Nephrologist for. I was surprised when the surgeon had told me there was two smaller ones considering I had a cat scan done for kidney pain a month or so earlier. 

 

A day after being discharged, I am gathering all my things for my follow up, and read my discharge paperwork. On it says slightly complicated cyst on left kidney. Odd considering none of the doctors (at least four) I saw mentioned it. Neither did the surgeon. Unfortunately, I cannot reach out to the hospital doctor. I wasn't given the size or anything. Mentioned it at my follow up, and was told I couldn't be sent for a biopsy because it was last minute. 

 

I have an appointment with the Nephrologist on Wednesday. 

I just don't know what to do, or expect. 

 

I have three kids, and it's not helping my anxiety. I am so afraid. 

 

Sorry for writing so much. I'm just so confused.

Sheila Mc
Posts: 21
Joined: Sep 2020

try not to worry, your Nephrologist will discuss your scan results and options with you. Did you have a biopsy on the first cyst or is that why you are going? Not all cysts are cancerous, some are just cysts that require further review. 

K93
Posts: 19
Joined: Oct 2020

Hi! I did not! I had a doctor that wanted to remove it, bit got scared. It was a lot smaller. I had cysts on my ovaries at the time, and believed the cyst too would disappear. Here we are. It is still a simple cyst 4 years later. I'm really scared about the whole thing. I'm just a wreck. I'm so scared about seeing a Nephrologist. I don't know what to ask, and what to do. 

K93
Posts: 19
Joined: Oct 2020

Sorry, I was originally sent to a Nephrologist because if said cyst. My insurance actually denied it. Until I went to the hospital and the cyst grew and the lovely complicated one was found. I feel like that was what got things in motion. 

Sheila Mc
Posts: 21
Joined: Sep 2020

we are here for you, please let us know how your visit goes. 

eug91's picture
eug91
Posts: 263
Joined: Jan 2019

Hi, k93. Sorry you're going through this, but this is a great message board here. Everyone here has been through a similar experience as yours - we got through it, so we know you can, too! 

It's perfectly normal to be scared and anxious. Any news like this is going to be shocking and scary, but as Sheila said, not all cysts are cancerous.

Focus on Wednesday because your nephrologist will be able to give you answers. Consider bringing a notepad with you. Write down your questions for them beforehand, then write down the answers during your appointment. Or if you're like me and can jot questions/notes on your phone, do that. A few questions you can ask-

-What's the size of the cyst? 

-What's our next step to determine if it's benign or malignant? Biopsy or another type of scan? 

Start from there. Write down what the doctor tells you. If you're confused by anything, ask for clarification - if you think of questions later, you can ask us here.

You can do this. You're gonna do great - we're with you!

 

K93
Posts: 19
Joined: Oct 2020

Thank you so much! 

Deanie0916
Posts: 331
Joined: Nov 2016

that you are in this position if waiting and worrying. It might help to have another person with you to take notes and be an extra pair of ears for you. Please ask any questions you have we're here for you!

K93
Posts: 19
Joined: Oct 2020

I do not think anyone would be allowed in the office because of Covid. Doesn't help I'm in an area that was hit sort of bad at the beginning. 

Deanie0916
Posts: 331
Joined: Nov 2016

That's probably the case. No harm in asking. Maybe record it? Good luck!

AliceB1950's picture
AliceB1950
Posts: 75
Joined: Jun 2019

Are the results of the CT scan posted in your on-line portal? If so, read it carefully and write down any questions you have for the nephrologist. It sounds like you might be prone to having non-cancerous cysts, which is probably annoying and possibly uncomfortable, but not necessarily scary.  Good luck at your appointment.

K93
Posts: 19
Joined: Oct 2020

no, I only know the size of one. The other three were found last Thursday. I have the cd the hospital gave me. I'm familiar with simple cysts, just not "slightly complicated" ones. 

Bay Area Guy's picture
Bay Area Guy
Posts: 455
Joined: Jun 2016

Hi K93.  Things will go fine.  As you can see by the responses you've gotten, we've all been where you are at some point in our lives.  When my primary care doc first got the results of mt CT scan (done, I think, because I had some microscopic blood in my urine and he likely thought it was a kidney stone), I was in a panic.  I called my sister, a nurse practitioner who, in my obviously biased opinion, is one of the smartest people on the planet.  She got me calmed down and focused.  Then my doc got me a referral to a fantastic urologist at Stanford Hospital in Palo Alto.  He calmed me down completely.

Some things to remember.  Don't go to Dr. Google.  Much of what you find online is way out of date and some is just plain inaccurate.  Better not to read things at all (speaking from first hand experience.)

EUG91's advice is really good.  Before your appointment, write down any questions you have.  Then bring either a recorder (sorry, my age is showing) and a writing pad to the appointment to record the conversation and take notes.  I found in my first appointment with the urologist, between my wife and me, we got maybe 75% of what he said.  I probably got about 25% of it while my wife got 50%.  There's just too much going on in your head and with your emotions to get it all.

Remember that a lot of cysts are benign.  But also remember that the treatment for malignancies in the kidney have come a very long way in the last decade or so.  All of us here are either survivors or loved ones of survivors and there are a LOT of us here.  That should give you a lot of confidence that all will be well.

We'll be here for you when you get back from your appointment tomorrow and we'll support you the whole way through.

K93
Posts: 19
Joined: Oct 2020

Thank you! I was super nervous even coming here. So I really do appreciate everything from everyone. 

 

I have really and anxiety, so I'm trying to hard not to Google. :(

K93
Posts: 19
Joined: Oct 2020

Went today it was super interesting. Showed me the cat scan results. He wants me to go in for blood work, another scan, and a urine sample. I mentioned the dreaded c word, and he didn't say anything concerning. I don't know what to think. 

Sheila Mc
Posts: 21
Joined: Sep 2020

 Your physician can specify what he wants the radiologist to focus on in a new scan and Bloodwork and urine analysis are important to measure kidney function. Sounds like he is gathering all the facts to make a diagnosis as to why you are developing cysts in your kidney. Keep paper and pen handy and write down all your concerns for your next visit, it will be easier for him to answer once he has all the facts. Try and stay positive, the odds are in your favor. 

 

K93
Posts: 19
Joined: Oct 2020

He told me it's not common for 27 year olds to get cysts. Right now doesn't think it is PKD, or possibly C. My blood work is all normal. So, I'm curious what will come up in January. Thank you all. 

K93
Posts: 19
Joined: Oct 2020

Some days are better than others, and I am still so scared. January seems so far away. 

Bay Area Guy's picture
Bay Area Guy
Posts: 455
Joined: Jun 2016

Sounds like you had a very good appointment.  

K93
Posts: 19
Joined: Oct 2020

Ive taken two urinalysis. One has microscopic blood, and, and I had to retest.  The next my primary said was normal. However, when I looked at my results online it said there was trace blood, white blood cells and bacterial. Should I call my Nephrologist?

 

This lock down has messed with me. I had generalized anxiety before Covid, and it has managed to manifest into health anxiety. All of this isn't helping and I'm scared. 

Bay Area Guy's picture
Bay Area Guy
Posts: 455
Joined: Jun 2016

It can't hurt to call the nephrologist.  Peace of mind is a valuable commodity.

K93
Posts: 19
Joined: Oct 2020

Thank you. I will call them right now.

 

eug91's picture
eug91
Posts: 263
Joined: Jan 2019

Bay Area Guy is right - shoot them a message. 

As for the anxiety, please understand you're not alone. A lot of us have anxiety and high blood pressure, and this year has not helped either - not with COVID and lockdown and politics and endless Zoom meetings, etc. Please take care of yourself. As you go through this process, don't be afraid to mention it to your doctor. 

You're doing great - keep it going!

K93
Posts: 19
Joined: Oct 2020

I immediately **** down when I explain my symptoms because I'm so afraid of a doctor finding out I have health anxiety.

 

Thankfully, I do not have high blood pressure, bit the uncertainty is making me overwhelmed and depressed.

K93
Posts: 19
Joined: Oct 2020

I had my appointment Yesterday with the Nephrologist. I'm assuming my blood work came back good because he didn't say anything. 

 

I asked him if it was "c" and he hinted at it being no. I still have to have the ultrasound done to have it checked out. 

 

I don't want to have it done before Thanksgiving, and I don't want to wait to long where the results are just sitting in my inbox

 

But at the same time I just want to have it done. 

 

I give you all kudos. You're all so strong. I'm already so exhausted. I don't know what to do. 

AliceB1950's picture
AliceB1950
Posts: 75
Joined: Jun 2019

I strongly encourage you to do things to distract your mind - watch your favorite comedy movies, or even cartoons. Play fun music. If the weather's nice, go to a park and breathe deep. Take a picnic and turn it into an outing.  Oh, and watch the last few seasons of American Ninja Warrior. There's a guy on there who donated a kidney but he's still an awesome athlete who is in the top tier of contenders with just one kidney.

None of us are particularly strong (well, a few members like Donna are). We just keep putting one foot in front of the other as long as we need to.  The best advice I got for another surgery I usually save until people are going for their nephrectomies, but I think you need it now: You don't have to be brave, you just have to show up. For you, that means to trust your medical team and stop overthinking, at least until you have more information.

K93
Posts: 19
Joined: Oct 2020

Thank you! I needed this! I had a good weekend. Went out Christmas shopping, and didn't think about anything. 

 

Tomorrow is the big day 

Subscribe to Comments for "New here"