Kidney Cysts

Sorry to hear that you are going through this! To me the worst part is the waiting, waiting for tests, waiting for results, etc.

There are others here that can offer advice based on your specific situation, all I can say is-  don't do nothing!

My story in a nut shell - 3yrs ago they found a 2.5 cm mass that at first they said looked suspicious, then after a CT they ruled it to be a simple cyst. No need to worry. So I never looked into again, I was 29. Now that 2.5 cyst is 8.7 cm (which from what I gather is a pretty fast growth rate) and it's cancer. The only way I knew it was there, and so large,  is b/c I had had a kidney stone that landed me in the ER on Easter this year. My point is, it may be a cyst and they may want to monitor it. If thats the case make sure you continue to monitor it. Don't simply walk away without continued monitoring. And if they want to take it out, let 'em!

In hindsight, I've had back pain for a while, but I wouldn't consider it pain, more discomfort like I slept wrong or should have better posture, and have been fatigued more than normal. Until the kidney stone I never had blood in my urine either.

Good luck and I hope you get answers soon!

MeMeJoy said:

just don't do nothing

Sorry to hear that you are going through this! To me the worst part is the waiting, waiting for tests, waiting for results, etc.

There are others here that can offer advice based on your specific situation, all I can say is-  don't do nothing!

My story in a nut shell - 3yrs ago they found a 2.5 cm mass that at first they said looked suspicious, then after a CT they ruled it to be a simple cyst. No need to worry. So I never looked into again, I was 29. Now that 2.5 cyst is 8.7 cm (which from what I gather is a pretty fast growth rate) and it's cancer. The only way I knew it was there, and so large,  is b/c I had had a kidney stone that landed me in the ER on Easter this year. My point is, it may be a cyst and they may want to monitor it. If thats the case make sure you continue to monitor it. Don't simply walk away without continued monitoring. And if they want to take it out, let 'em!

In hindsight, I've had back pain for a while, but I wouldn't consider it pain, more discomfort like I slept wrong or should have better posture, and have been fatigued more than normal. Until the kidney stone I never had blood in my urine either.

Good luck and I hope you get answers soon!

Usually cysts of 1 cm or less are benign and they are very common. At 2.5 cm it defineltly needs to be checked on a CT which can usually tell if it is Cancer, but only in terms of a percentage. The good news is that even if it is the big C it is as close to 100% curable  as you can get with the surgery alone.

 Icemantoo

samNML said:

Thanks for the replies,

Thanks for the replies, really appreciate that...

I should be hearing soon for my CT scan appointment.

Let us know how you get on. All the best.

Djinnie

samNML said:

Hi everyone,
 
I just got a

Hi everyone,

 

I just got a call from the hospital and my CT scan has been scheduled for SEPTEMBER 27th??

I have to wait 4 months!!! that's way too long to investigate a cyst....

 

Sam

The idea that a cyst on a kidney will necessarily be cancer is unfounded.  It's also folklore that 'it's bound to become cancerous'. 

Most of us will have numbers of kidney cysts which are benign.  As we get older we practically all get them.  Obviously if we get symptoms thorough investigation is necessary.  If we know we have a cyst or cysts, monitoring at appropriate intervals makes good sense. 

MeMeJoy's experience is a salutary warning not to be complacent, though in fairness to her docs, hers must be a very unusually unlucky history - I've certainly never heard of anything like it - the staggering rate of growth sounds as if it could only be due to a recurrence or a met from an unknown primary.  Against a typical RCC tumor growth rate of about 1/3cm per year,  growing 6.2 cm in 3 years is astonishing.

A 4 month wait for you isn't really much to get too excited about since you very likely have no cause for worry.  I've lost one kidney and have a 6.5 cm cyst on the top of my remaining kidney, which we're not unduly worried about, but then I do get CT scans with contrast every 12 weeks.

Don't get too worked up about the wait but if you're going to find it too much to bear why not say so and ask if you can have it brought forward a bit?

Texas_wedge said:

One or two more thoughts

The idea that a cyst on a kidney will necessarily be cancer is unfounded.  It's also folklore that 'it's bound to become cancerous'. 

Most of us will have numbers of kidney cysts which are benign.  As we get older we practically all get them.  Obviously if we get symptoms thorough investigation is necessary.  If we know we have a cyst or cysts, monitoring at appropriate intervals makes good sense. 

MeMeJoy's experience is a salutary warning not to be complacent, though in fairness to her docs, hers must be a very unusually unlucky history - I've certainly never heard of anything like it - the staggering rate of growth sounds as if it could only be due to a recurrence or a met from an unknown primary.  Against a typical RCC tumor growth rate of about 1/3cm per year,  growing 6.2 cm in 3 years is astonishing.

A 4 month wait for you isn't really much to get too excited about since you very likely have no cause for worry.  I've lost one kidney and have a 6.5 cm cyst on the top of my remaining kidney, which we're not unduly worried about, but then I do get CT scans with contrast every 12 weeks.

Don't get too worked up about the wait but if you're going to find it too much to bear why not say so and ask if you can have it brought forward a bit?

Cmon cysts are fluid filled and cancerous tumors are heavy and dense,hey T since you recieve contrast when getting a CT scan for which i am assuming you are givin a half dose what is your creatinine level.

Texas_wedge said:

Scans

Actually, I get full dose every time, so far as I know - maybe I'll just verify this next time, but a reduction has never been mentioned.  My latest creatinine level was 110 umol/L, giving me an eGFR of 59.

Your kidney function is amazingly good for missing one kidney and a large cyst in the other. What do you attribute that to?

Your kidney function is better than mine when I had 2 kidneys 2-3 years ago.

Todd

Texas_wedge said:

Kidney function

First thing to say, Todd, is that the cyst is benign and of course we hope it remains that way - no great reason to fear it won't - and it won't have any material effect on function.

Otherwise, I guess I was lucky to have a good genetic legacy and I've been fit and strong all my life.  I've dabbled in quite a few different sports (favourites being competitive weight-lifting, rowing and running - a few marathons  and half-marathons) and have kept in decent shape for all of my 70 years. I picked up an Award in Physical Education from Edinburgh University while doing research for a Doctorate in psychology (which, in the event,  I never completed).

I've been interested in matters like exercise physiology, anthropometrics, nutrition, allergy and food intolerance/sensitivity for as long as I can remember and so I've always had a fairly sensible diet and lifestyle.  I'm a non-smoker and kept my bodyweight within a pound or two either side of 11 stone/70 kg for the last 55 years, though I'm now down to around 141 lbs but seem to have arrested the decline at above 10 stone and shall try to pack a bit of muscle back on if I can.

I don't know what my kidney function was in the past but presumably pretty good. I was never ill and so didn't have any health screening at all between about age seven and my late sixties - actually had an all clear just a few months before an episode of gross haematuria, following a long golf match in the Scottish Highlands, led to detection of very advanced cancer!

At the moment, my eGFR moves about from around 53 to over 60, probably depending on whether I've allowed myself to get slightly de-hydrated.  That's good enough at seventy and with one kidney so it helps me to look on the bright side.  However, plenty of folks are doing OK on much lower figures, even youngsters like you. 

I too have a cyst in my right Kidney, it was there before my surgery and the doctors are not concerned with it overall.  But my Kidney function is not as good as yours, with a higher Createnine level.  But I just forget about it.  However I have made sure my diet changed to be Kidney friendly.  I drink a lot more water than ever and have eliminated most of the salt.

Be Well All...

Ron

Texas_wedge said:

Kidney function

First thing to say, Todd, is that the cyst is benign and of course we hope it remains that way - no great reason to fear it won't - and it won't have any material effect on function.

Otherwise, I guess I was lucky to have a good genetic legacy and I've been fit and strong all my life.  I've dabbled in quite a few different sports (favourites being competitive weight-lifting, rowing and running - a few marathons  and half-marathons) and have kept in decent shape for all of my 70 years. I picked up an Award in Physical Education from Edinburgh University while doing research for a Doctorate in psychology (which, in the event,  I never completed).

I've been interested in matters like exercise physiology, anthropometrics, nutrition, allergy and food intolerance/sensitivity for as long as I can remember and so I've always had a fairly sensible diet and lifestyle.  I'm a non-smoker and kept my bodyweight within a pound or two either side of 11 stone/70 kg for the last 55 years, though I'm now down to around 141 lbs but seem to have arrested the decline at above 10 stone and shall try to pack a bit of muscle back on if I can.

I don't know what my kidney function was in the past but presumably pretty good. I was never ill and so didn't have any health screening at all between about age seven and my late sixties - actually had an all clear just a few months before an episode of gross haematuria, following a long golf match in the Scottish Highlands, led to detection of very advanced cancer!

At the moment, my eGFR moves about from around 53 to over 60, probably depending on whether I've allowed myself to get slightly de-hydrated.  That's good enough at seventy and with one kidney so it helps me to look on the bright side.  However, plenty of folks are doing OK on much lower figures, even youngsters like you. 

My creatinine was 1.3 a couple of years back. I wondered if the tumor that was undoubtedly there could have affected that back then. It's been in the 1.5+ to 1.6+ range since I healed up from my surgery (but was at 1.9 just following my surgery). The kidney they took was my larger kidney. They were concerned that the smaller, remaining kidney might not have enough filtration to handle things, but thank goodness that turned out not to be the case.

I was under the impression that cysts would or could affect kidney function just by interfering with filtration, but I suppose it depends on where it is? Keeping BP low certainly helps and keeping overall body fat low helps with BP among many things.

Wish I had had some interest in sports or athletics, but I never did. I spent 5 years in the Army where I was forced to participate, and that was my first real introduction to physical fitness. But their emphasis certainly wasn't on enjoying yourself! Can't say it stuck with me. When my sons were playing soccer I referreed a ton of games for several years, but continued to gain weight during that time. I've seemed to have always had a slow metabolism and even moderate amounts of food cause me to gain. But I'm also aware that more exercise would definitely help that. Some of the slow metabolism has probably been my sleep apnea discovered about 10 years ago. I have severe sleep apnea and use a CPAP machine to keep me breating at night. I'm not sure the CPAP machine has been fully effective, but I'm sure I"d have been worse off without it.

You're an inspiration. I'm glad to have been reading your posts in these months.

Todd

GSRon said:

IOM

Hi ya TW..!  Oh my.. yes I can do my diet on the IOM.  There is a small store inside the close by gas station.. they have fresh fruit, ready made salads, and lots of cold water..  yes I will have some bad food at times..  Oh yes and the Manx Kippers... too much salt, but tasty..  I will have only one Kipper in the two weeks I will be there.   I will take some good California red wine with me, and not have any beer.   I know my Hostess will hand me a cocktail daily.. but heck just one...

So, I am now in full race prep mode, I have less than two months to get my racer ready to ship.  The shipping details are all sorted, whew..!   Today I put on the IOM gearing and made up a new transmission part to reverse the shift pattern.  Tomorrow I will install the transmission part and change the internal gearing for first and second gears.  Lots more to do in very little time.. but it will be done..     If you are in to motorcycles both old and new, the IOM in late August is THE place to be..  Me and a bunch of Yanks are going this year.   I will meet up with pals from all over the world..!!

There is NO time to worry about the Cancer... 

Be Well All..!!

Ron

You're a braver man than I am, Ron.  A few of my old pals from Scotland and Canada will likely be there but it's not for me. 

I don't suppose you wear a kipper there but I imagine at times you do a bit of praying!  Remind me not to play golf there in August - at least, not to book a tee-time at TT time!