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Complex kidney cyst

mkf1958
Posts: 8
Joined: Jan 2013

I recently was diagnosed with a complex renal cyst and the doctor told me 90% that it was cancer. Scheduled for ultrasound (found cyst during a belly pain MRI). What to expect as I have been told that a partial nephrectomy will be done soon. Pain out of surgery? Fill me in. I can take it! I am new to this discussion board. I welcome any suggestions or comments as I suffer from anxiety disorder so I worry all the time.  Anyone that can comment if you been there... Help!

todd121
Posts: 496
Joined: Dec 2012

Hi. I'm pretty new here also. They found a mass in my right kidney at the end of November which turned out to be cancer and I had my kidney removed in early December. It turned out to be clear cell RCC (renal cell carcinoma) and the tumor was stage 3a.

I'm not sure why they called it a cyst. I think the term mass is more accurate until they figure out what it is. Cysts are quite common in people over the age of 50. These are fluid-filled growths that are benign, as far as I understand it. If the doctor said it's 90% likely to be cancer, then it's probably a mass or a tumor. Perhaps by complex they meant they aren't sure what it is?

Normally they would do a CT scan with contrast next to get a good look at it. They can tell if it's a cyst (benign, fluid-filled mass) versus a tumor from the ct scan. This is what they did in my case. 90% of tumors are RCC, and something like 5% are benign tumors. This is all based on my poor memory and what I was told. They said they wouldn't know which it was until it came out. Mine had to come it. It was 6.8 cm and mine was in the middle of the kidney in the middle of the blood supply so no way to do a partial nephrectomy. I had to have a radical nephrectomy.

I wouldn't have a nephrectomy based on an ultrasound. I don't think it's accurate enough. Is your doctor a urologic oncologist? If possible, I'd try to find a specialist that really knows kidney cancer. What size is the mass and where is it? Did you only have an ultrasound so far?

I worry all the time too. I worried before and I worry now. So you're not alone! Prayer and meditation and doing something you enjoy might help. Best wishes to you. Please let us know how you are doing.

mkf1958
Posts: 8
Joined: Jan 2013

Thank you.  Cyst 3mm found on MRI. Bottom lobe of kidney. That was September. Does a few month make a difference in size and diagnosis?  Ultrasound only to confirm size and shape I think. Will know a week from tomorrow. I will post once I know more. God bless all of you!

icemantoo's picture
icemantoo
Posts: 1453
Joined: Jan 2010

mkf1958,

 

First double check your diagnosis. I believe you mean 3 cm not 3mm. At 3mm there would not even be a concern. 3cm is a small cyst. Usually under 4 cm bodes well for a complete recoovery from the surgery alone. They will probably confirm the diagnosis with a CT.

 

The surgery is not fun and there is no way I can sugar coat it. All of us who have been members of the club have had it. Mine was 10 and 1/2 years ago. You will get a good idea from the other posts about the surgery and recovery. For know do not be concerned  with those posting about drug tests and complications as those are for members coming into RCC with a much more serious diagnosi than a 3 cm cyst or tumor,

 

Having gone thru this I know how hard it is to hear the C word. Just look at it this way, After the surgery you can tell people that you had Cancer, not that you have it.

 

Icemantoo

mkf1958
Posts: 8
Joined: Jan 2013

Thanks for the replies and hope that I will be able to post as a cancer survivor.

 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi mkf,

Yes, at 3mm it would be about the size of a BB and unlikely to even be seen, 3cm is a little over an inch, quite a difference but still considered to be very small as far as tumors are concerned.  Consider yourself very lucky at this point because the surgery alone will likely be the only treatment ever required.  BTW, mine was 4.2cm and over three years ago and mine was a laporascopic full nephrectomy, a partial like yours is better yet as it retains kidney function.

Everyone is different as far as recovery and healing goes, but if you have a lap. procedure you can plan on 2 to 4 days in the hospital and a couple weeks down time afterwards before you feel like doing much.  For an open procedure you can double those numbers as a rule of thumb.  Don't worry too much about the pain, that will be managed well in the hospital and you'll have a plan to handle it before you leave.  Many of us have spent the first few nights at home in a recliner as it is more comfortable and easier to get in and out of than a bed.  Two things to remember for an easier recovery are walking and water.  Walking early and often and drinking plenty of water following surgery helps all bodily functions return to normal and speeds the recovery and healing process.  The emotions and anxiety you are feeling are normal and will will take your mind awhile to adjust to what is going on, sometimes it takes longer to heal mentally than physically from this ordeal so don't be afraid to seek professional help if you need it.

We're not doctors, but there is a solid group of knowledgeable and supportive people here and we'll help you along the way if you need it so keep us posted.

Good luck and Godspeed,

Gary

mkf1958
Posts: 8
Joined: Jan 2013

Thanks Gary!  I will using the robotic surgery.  Hear good things about this.

Mike

 

 

todd121
Posts: 496
Joined: Dec 2012

You had the MRI in September? Why the delay to take care of it? As others said, I'm guessing you meant 3cm. 3cm is small, and if it's squarely in the bottom lobe, you'd likely be stage 1 and have a very good prognosis that this surgery would cure you.

I wouldn't delay taking care of it much longer. I read somewhere that these tumors grow between 0.1 and 0.8 cm per month.

My surgeon has a very good website describing the different types of tumors, cysts and treatments available. They will want to remove it so they can do a pathology to see what it is exactly. They can generally tell cyst, benign tumor, or cancer from a ct scan, but can't tell exactly without a pathology report.

His website is a pretty good source of general information. Have a look. http://www.kidneycancerinstitute.com/

I had a full nephrectomy done laproscopically and spent 2 nights in the hospital. As gary said, drink lots of water and walk soon and as much as you can get yourself to do it. Also, breathe deeply and cough even if it hurts. You want to keep your lungs clear. They will tell you in the hospital. Do those breathing exercises they recommend.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Todd, I take it you meant per year - that would be a reasonable approximation - a small primary tumour that grew almost 10cm in a year would be an out and out record breaker.  Typical growth is around a third of a cm/yr, slower if chRCC - usuually more like a quarter of a cm/yr.

todd121
Posts: 496
Joined: Dec 2012

Yes! Thanks. 0.1 and 0.8 cm per year is the range on the growth rate. Sorry. That rate I quoted would be scary. 

If I had a 3 cm mass, I would want it out asap. I wish mine had gotten caught a year ago when I first had symptoms. I had intermittent symptoms. The first case of gross hematuria was on my birthday in December of 2011. Doctors were puzzled but didn't see any other symptoms and the symptoms lasted one evening and the whole thing went underground for another year. No way of knowing what size it was back then. It seems family doctors and urgent care doctors aren't prepared to diagnose this. Unexplained gross hematuria is something that should be looked into with a scan if tests show no infection is present.

Todd

foxhd's picture
foxhd
Posts: 1856
Joined: Oct 2011

At less than a cm /year it should have plenty of time to be discovered. Mine was over 7 cm and I had had my gall bladder removered a couple years earlier. It was never noticed until I was doubled over in pain and peeing out blood faster than a couple college kids draining a keg.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Todd's experience does sound like sloppy doctoring to me.  The problem usually is RCC being so asymptomatic. Mine being chromophobe - the most indolent form - it reached 9 cm before I got the first frank haematuria by which time it was already incurable by any means known to medical science so far (so says the leading expert, Dr. Tannir - in general, not with reference to me!)

Mine gave the appearance of having cleared up but my GP continued to test samples and even when they appeared clear he said they had "just as much blood" as when obviously red-brown - i.e. plenty enough to still be diagnostically significant so I was put through all the tests up to CT with contrast which gave us the bad news unequivocally.

Nonetheless, I still think Todd has very little to worry about so long as he continues to be properly monitored.

 

mkf1958
Posts: 8
Joined: Jan 2013

There was no delay really, just the ability to see my own doctor.  The MRI was done for another reason and I was told as the discharged me from the hospital that I had a cyst and not to get excited.  I then made an appointment with my own doctor and he explained simple cysts and said we all get these.  After he got my records, he had me at the urologist in 5 days and here we are.  Ultra sound Friday and then the surgery date. Thanks for the post!

Mike

mkf1958
Posts: 8
Joined: Jan 2013

Found out Bosniak level 4 but in good spot.  Not looking forward to surgery but need to get it out! Partial only.  We will see if it is still only on the one kidney. 

Found another on other kidney but said it was simple.  Doctor made mistake on first one until MRI with contrast.  Now I need to follow up on this one.  No date on surgery yet,  No one seems in too much of a hurry.  I guess we will see!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

nini2three
Posts: 1
Joined: Feb 2013

Hi,  New to this board.  I also had a complex cyst on my left kidney which was found as a result of a pelvic ultrasound.  No one would say it was cancer, even when I asked point blank.  Anyway, was told I had to have a radical nephrectomy.  Got a second opinion from a well known surgeon at a New York hospital and turned out only needed a partial nephrectomy.  Luckily, it turned out to be just a weird cyst.  Was in the hospital 3 days.  Definitely needed someone to take care of me for about 5 days.  Not so much pain as very uncomfortable.  Bloated and constipated from surgery and pain meds.  Stopped taking meds on the second day home as I couldn't handle the side effects.  Still suffering from constipation and bloated.  Thought it would be gone by now, surgery was November 26, 2012.  Was very tired and slept a lot upon coming home.  Out of work until February 1.  Give yourself time to heal, don't rush anything.  Everyone heals differently and in their own time.  Best advice:  drink water and make sure you eat 3 meals a day with protein.  When I slipped with doing this,  I felt weak and sick.  Let people help you til you are on your feet again.

 

On another note,  lately, for about the past month, I keep smelling something that reminds me of old spice gone bad.  It's not a bad odor just annoying.  It's got to be me because I smell it everywhere.  Anyone else experience this?

augello55
Posts: 12
Joined: Mar 2013

I have to say that the pain I have experienced thru the recovery process has been minimal compared to how uncomfortable i have been in the 6 weeks since surgery.   have you had any trouble with your appetite???   I am struggling to eat   jello and popsicles have become my best friends??   there are days that something might sound good....and there are days that I gag at the thought of even attempting food?   i did experience some "strange" smells...i don't notice them as often...not sure what they were...and my husband did not ever smell anything.

 

 

jack'smom
Posts: 1
Joined: May 2014

I was diagnosed with a complex renal cyst in 8/13. what they didn't tell me was it was found in 2/13 but the new ct scan showed it went from 3.3cm cyst to 4.5x3.4 x4.5 in 6months. It had multiple septa and minimal enhancments.  classified as Bosnial IIF. Now they followed with a sonogram 6 mths later now it is 4.6 x 4x4 x 3.9. The tech doing the exam said she saw more enhancmets as well  but that didn't end up in written report. The doc said it hasnt grown significantly so he will check again in 6ths.  When I asked about the first significant growth the first 6 mths and how it was classified as IIF he said "Its not a big deal, IIF just means one degree away from normal.  Oh there is also a second cyst in the same kidney small 10mm 6 mths ago and now 13mm.  I know not very big at all.  Any words of wisdom.  Is it "No Big deal" like the urologist says?  

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