Kidney cysts and dropping GFR

[worldtravel75]

I have stage 4 cancer that is under control right now ut my kidney function is getting worse - My last couple of CT scans have shown that I now have cysts in my kidneys - could this e the reason my GFR is dropping into the 30's and is there anything I can do about these? Anyone else with cysts?

[Skeptix]

Sorry to hear of your woes (kidney trouble is enough in itself to be getting your knickers in a twist over, without cancer too)

Obvious question: what does your doc say? Are you seeing a neprologist? From what I've read in passing, treatments for cancer can be kidney affecting.

For info: you happen to be at a point in time when the kidney medic world is in (slow) transition. Up to very recently (2020) the guidance was little or no intervention in declining kidney function until end stages. In other words, you were left until the time came to prep you for dialysis/transplant.

Recently however, dietary alterations has come to the fore as an earlier stage treatment (eGFR 30 would equate to the bottom of barrel of stage 3b, just before stage 4. Stage 5 is end of the line: dialysis awaits). It's probably safe enough to say, without knowing the specifics, that you would do well to start dietary intervention to take the load off your kidneys; whether you have CKD or whether your eGFR is down for other reasons.

Going plant-based is about the cut of it at eGFR 30. And even if not quite that drastic whilst you get yourself up to speed then certainly a big shift in that direction: cutting out red meat nigh on altogether, cutting out (heavily) processed foods, cutting white meat/fish portion size, etc.

[worldtravel75 in reply to Skeptix]

Thanks. Sending a message to my nephrologist who I don’t believe has any idea that I have kidney cysts. Embarking on a strict -or almost strict diet

[Skeptix in reply to worldtravel75]

One ought to be surprised at the idea that your neff has no idea that you have kidney cysts. Kidney doctor not abreast as to the goings on with your kidneys??

But one isn't surprised. But certainly the first thing is to let them know and see what they say.

Re: diet, have a read around here and you'll get the general gist as to what folk are doing. There are difference and differences of opinion but you will pick up commonalities. Plant based / or low quantity (white) meat is a commonality.

There are nuances. Lowering protein intake is pretty much to the fore (whether low or very low protein). So it's not just a case of stopping meat ...and then piling on high protein non-animal. Low and very low protein diets are part of the latest 2020 NKF recommendations. In association with your doctor of course (assuming your doctor is up to speed on the latest guidelines, many aren't it would appear). But don't be dissuaded, there is progress to be made whilst you get your docs on board.

When you get onto your neff, one of the things to be suggesting is fullest panel bloods so as to get a picture of where you are. There are some folk who are eGFR 30 whose (for example) urea is completely in spec and others (for example me) who had very high urea. You need to know what you need to be addressing - it's not one size fits all.

[worldtravel75 in reply to Skeptix]

Thanks for your input. Helpful

[RhenDutchess123 in reply to Skeptix]

And salt...Colas and read labels for phosphourus

[Hidden]

Sorry to hear of the decline in kidney function. Albeit you have a lot on your plate I would say take one step at a time. Dealing with cancer, you probably already know to do that.

I had stage 1 colon cancer, polycystic kidney disease, and severe anemia. My GFR was about 35 at the time. I had no choice other than to take one day at a time. I got through the cancer fairly well with just surgery but lost my kidneys due to the PKD. That happened all in the span of 2+ years. Fortunately, I was blessed with a transplant last September.

I’m sure cancer treatment will effect your kidney function.

I’m sending positive vibes your way 😊

[KidneyCoach NKF Ambassador in reply to Hidden]

You lost your kidneys due to PKD?Can you elaborate?

[athenat in reply to KidneyCoach]

PKD is a autoimmune disease where the kidneys produce alot of cysts thus stops kidney function eventually (kidney failure). Now OP needs to check if he just has one or two cysts vs actual PKD. I have PKD it is somewhat manageable but you really have to watch your GFR. Most likely the cancer did not help specially if he/she was getting a lot of contrast or chemo drugs. Best thing is to find out what is going on with the kidneys.

[KidneyCoach NKF Ambassador in reply to athenat]

Yes I'm familiar with PKD. Diagnosed 42 years ago. Aunts, uncles grandmother , father, 5 of 7 siblings also had it. Just curious on how you commented. Dialysis 20 years no transplant. Both PKD kidneys removed 15 years ago.Blessings

[Hidden in reply to athenat]

Actually, half of those with PKD reach kidney failure by age 50. 11 people in my family have the disease. My dad was 65, one uncle at 60 the other at 67 at time of transplant. I was 50. The four of us all had transplants.

my sister is 50, and PKD, and her creatinine is at 1.0.

I had neither chemo or radiation. I had hundreds of cysts on each kidney. Had double nephrectomy due to cysts that were hemorrhaging. I was the the first in world to have robotic double nephrectomy and transplant. It’s quite amazing as I only have a 4 inch main incision.

[LuvSmallDogs in reply to Hidden]

I have hundreds of tiny cysts on my kidneys, as well as one large mass that the doctors never determined what it is, only that it is part solid and part fluid. I was 66 years old when diagnosed with this. I am now 70 years old, and my kidney function has been rapidly declining. I am trying to stop that by having now gone vegetarian/vegan and using Albutrix (a low nitrogen protein supplement) part of the time. My symptoms have definitely improved, so I am hoping my tests show improvement. Nobody in our family had PDK, or another condition that I have (that also is said to be hereditary), so I don't know how I came to have these conditions.

[worldtravel75]

Thanks so much. Wishing you well

[DEZIN]

Have you been diagnosed with PKD? I was diagnosed at 30 because of cysts I am in my sixties now. The thing that has help me was the change in my diet

Kidney friendly diet. I have never been on dialysis. I feel for you having to

Deal with cancer and kidney problems.

[sparkie88]

You need to see a nephrologist for this.I have cysts and caused scars in kidneys. If your egfr is less than 60 for 3 months than talk to Dr sand ask if your medications are the cause if it is can you reduce of change it. You need to find out the cause before trying anything. Else nothing will helps. My egfr increased after removing a second medication. Also drink enough water again ask Dr how much can you drink. It isn't the more the merrier it will cause your brains lungs and kidneys to swell but enough.

[Organplayer]

hi, I have been told I have simple cysts in both kidneys but the are harmless unless grow too big! My GFR is 35 ,

From Organplayer