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complex renal cyst awaiting full diagnosis

outland8947
Posts: 2
Joined: Aug 2014

I am a 27 year old female college student and mother of one. In may of this year, I became suddenly ill and it lasted for a week straight. When arriving to the er, I was completely dehydrated. They told me I tested positive for h.pylori and said I needed to see my regular doctor. I was then referred to gastro and they ran fifteen different tests on me in two months including the h.pylori (which came back negative and was left unexplained), a CT with contrast and numerous ultrasounds.  The results show that I had a 16mm cyst in the right mid-kidney. They said out of my leaugue and I was then referred to a nephrologist.  During that exam, she explained that my cyst was complex with shadows and had slightly grown since it's last picture. She tried to draw a picture to give me an example of the difference between a simple and complex cyst and how she couldn't call my cyst benign. After she said that, I didn't really catch the rest other than my kidney may have to come out and this was out of her league. So now I am waiting for the referral to a urologist to be fully diagnosed. I'm shocked that I may have cancer...I'm just stunned.  I'm scared because I have a little girl and I'm disappointed that I'll be adding yet another health issue to my stack. I wanted to join this site to see if someone has gone thru this. I need to hear from someone that understands. I try to get opinions of family and friends but they act as if it is like getting your appendix taken out and I'm pretty sure it's not that simple.  Could my crazy sudden sickness be because of my kidney? If I lose this kidney, is there a chance that it can come back in the other one? Are ther any side effect to having one kidney? Is there any chance a complex odd shaped shadowed cyst is not malignant?....sorry, If my thoughts are scattered. I'm facing a long waiting period without knowing the basics and it's killing me. Any and every piece of info is greatly appreciated! 

APny's picture
APny
Posts: 1998
Joined: Mar 2014

I'm sorry you had to join us but yes, everyone here has experienced what you are going through. The most important thing is to find a physician who specializes in this and is not out of his or her league. Even if your cyst turns out to be cancerous it's very small so depending on where it is, they may be able to do a partial nephrectomy rather than take the whole kidney. That's why it's important to find someone who knows this very well and is experienced in kidney surgery. I had a partial in March and it was not as bad as I had feared. Being nervous is an understatement, lol. I was terrified. If they do have to remove your kidney, which is unlikely with such a small growth, you can do fine with just one. There are people who were born with one kidney and are functioning very well. But unless it's in a really bad spot most likely yours will be a partial.

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

Hi,

First take a long slow breath.  Of course you're scared, you have a young child and you're only 27.  Please try to realize that you really don't know anything yet.  The urologist will help you fill in the blanks.  Until then- know that you can live a long healthy life with one kidney. There are no side effects to having only one kidney.  As for your other questions about a shadowed cyst you'll need to leave that to the professionals. Maybe someone else will be able to help with that here.  All of the folks on this site will tell you to find a doctor that you trust and one who is familiar with renal cell cancer-whether it is or not,  if the first one isn't right for you keep looking until you find someone you can rely on and is knowledgable.   Also I would highly recommend that you bring a family member or close friend with you to your appoinment.  It is only natural that the patient zones out when important things are being discussed about them.  You need someone who can remain clear headed in order to help you make decisions about your care. 

Good luck and I will say a prayer that you won't need this site afterall.

Arleen

 

icemantoo's picture
icemantoo
Posts: 3336
Joined: Jan 2010

While diagnosing a complex cyst is above my paygrade, the one thing I can tell you is that at 16 mm it is very small. The worst case scenerio is that you will need surgery to remove it as well as a part or whole of one kidney. We have all been through that and with such a small little bugger your prognosis is excellent. Mine was 12 years ago.

You are however not there yet. Your best case scenerio is that it is nothing. Even if it turns out to be of concern you will be fine.

 

Icemantoo

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Kidney cancer with such a small tumor almost always doesn't have any symptoms. I hope they don't give up trying to find out why you were sick. You didn't say what your symtoms were. What were they? I've never heard of anyone with such a tiny cyst/mass/tumor having any symptoms. Most everyone with such a small one is found because of imaging done for other reasons. The rest of us had blood in the urine (visible) and maybe pain like a kidney stone, but even with large masses like mine (it was 7 cm), that was my only symptoms (bloody urine and side pain).

Cysts/stones are pretty common. At this size, they may want to do nothing but watch it. They might be able to do a partial instead of a full. Find a urologic oncologist (you may be sent to a regular oncologist, which is fine also, but if you can find a urologic oncologist, that would be better. They receive extra training in this area.).

My urologic oncologist has an excellent site explaining the different types of masses that can be found in the kidney and different treatment options that are available. I'd read this for a really good introduction.

http://www.kidneycancerinstitute.com/

Dr. Landman is the head of urology at the University of California, Irvine Medical School and is a urologic oncologist.

Don't panic. Just good really good advice from 2 experts the best you can find and see what they say you should do.

Are you better? I wonder why you were sick and why they did so many tests. It just doesn't seem likely you were sick from this cyst...

Let us know what you find out.

Todd

outland8947
Posts: 2
Joined: Aug 2014

My symptoms started in May of this year. Every test they have done have been just from may til now. The first day I remember I just felt off. A little nauseous but mostly faint. Like a drop in blood pressure. That night I woke up to this awful pain in my upper abdomen.  Like a contraction right under my rib cage. It would come and last for about 10 seconds then it would slowly fade. Although during the times I felt fine I was stuck in the bathroom and dealing with it basically coming out both ends (sorry, couldn't find another way to put it lol) the vomiting I believe was based around the pain? I thought I had a virus so I let it go for 5 days until i could no longer move. When I finally went to the er, they gave me fluids and said I tested positive for h.pylori. Which in their terms required lots of antibiotics and usually took more than one session of meds to kill it. I was sick for three more days with the vomiting and bm's. But my stomach pain lasted for two solid weeks then faded to every other day, now it's gone. I was referred to gastro and they are the actual ones who completed every single one of my crazy amount of tests. The endo scope showed nothing alarming but I had only been on antibiotics for the h.pylori for a week and even after telling me that it would take months for it to go away, they tested me shortly after and the breath test was negative. Therefore,  the gastro denied that diagnosis all together. The first ultrasound was full abdomen and it said it was normal. They believe that the tech just missed the cyst. The ct with contrast showed the most and they followed up with more ultrasounds. My stomach, gallbladder, spleen, so on were perfectly normal. I was then seeing a nurse practitioner and she told me about my kidney cyst. Just said there was one and sent me to a nephrologist and the nephrologist explained it was mid pole and that it was directly behind the tubes going to the kidney. She said there may have been some bleeding but showed the findings from the report and it said that the levels were higher than those of a simple and that there were shadows, echos..(sorry the paper is not in front of me )She said that the size doesn't matter. It grew 4 mm in two weeks. But the odd shape? And the dark spots. She did a blood test and said I needed to see a urologist. I still haven't heard anything back about the referral so I don't think I'll get in til next week. I still have no explication for why I was so sick. No one else in my home got sick. I was ok with a simple cyst but when she said that she  couldnt say the cyst was benign and then tried to explain the difference with my cyst than a simple cyst, I got a bit freaked out. I just wasn't expecting anything other than go on, you're fine. I was very happy to see that there was a social site and I appreciate that you all are patient enough to answer questions from one who is not in it as deep as most of you. But I feel like it's best to learn from those who have personally gone through these issues and won't leave out details. Thanks so much for every response!

icemantoo's picture
icemantoo
Posts: 3336
Joined: Jan 2010

Outland,

 

Often Rcc causes no symtoms and sometimes symptons lead to the discovery of RCC by accident as the symtoms are not related to your cyst.

Whatever the case it appears that if it is RCC it can be dealt with favorably even if that includes surgery. While 27 is too young for this type of diagnosis your youth will make it easier to overcome.

All of us have faced the same scary diagnosis and yours is very small. Hopefully not Rcc, but if it is you will be fine..

 

Icemantoo

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