nearly 5 yr appt - NED! BUT kidney values not NED - help?

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Ashera
Ashera Member Posts: 94
edited December 2022 in Kidney Cancer
The past 2 years, my GFR numbers have been in the hi 40s to 50s. My onologist says for me not to worry - it was to be expected due to really dose-dense chemo. My NP has been concerned. But now I am deciding to get more info. It indicates 3rd stage chronic kidney disease and 'they' suggested jumping straight ahead to a nephrologist. I balked - they are all out of town by over an hour. Doesn't sound like much - but I live in upper MN and that won't be happening soon with 5 solid months o snow. Why can't I go to a urologist?? I got assertive and finally got my 'consult' with the one I wanted in October. So my question...has anyone gone through this and what have you had to do?? I know it's sort of a wait and watch the values - but were there special diets, etc? I've already stopped all NSAIDS, alcohol, just do water and coffee. Do these numbers stay static or drift down? I know my consult will answer most of these - but I need to know what to stress about before! Thanks!

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  • JaneA
    JaneA Member Posts: 335
    edited August 2020
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    I'm not a kidney expert so I honestly don't know. But those are low numbers. It's a good idea to be proactive like you're doing. Unfortunately, all of us at WhatNext get stressed when our numbers aren't in the normal range. With the pandemic, it seems like our medical appts. take longer to get. All that you can do is wait for that appt. I keep busy with projects when I worried. We're here for you.
  • po18guy
    po18guy Member Posts: 329
    edited August 2020
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    My GFR places me at stage 3 chronic kidney disease. Creatinine runs high - has for years. It goes down in summer. Why? Because I drink water like a fish. It is the only basic way to lower those numbers and make your kidneys a little happier.

    Urologist? Kidneys are part of their job, but the urinary tract is their forte. A nephrologist has a focus on kidneys. Oh, and the NP being concerned? Fine as far as it goes, but the concern of another person in no way relates 1:1 with your current or future health.

    Good on you for being your own advocate. Even though you may have to travel, consulting with some of the best in the world of kidney function is a wise and prudent move.
  • Teachertina
    Teachertina Member Posts: 205
    edited September 2020
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    I am living with 3/4 of a kidney that I have to take good care of. Doctors said no salt, hard because salt is hidden in everything! Water, water, water! I have 1 cup of coffee each day, sometimes an evening beer, but other than that just healthy foods, organic when possible. So many foods, especially processed, are full of chemicals. I read a lot of labels. I can tell if I’ve had the wrong things when I wake up with puffy fingers in the morning! Then it’s more water!
  • Lorie
    Lorie Member Posts: 78
    edited August 2020
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    I know this answer might seem strange. I've had no experience with human kidney numbers. I have had animals that have had kidney problems and they get Sub-Q fluids that have phosphorus binders in it because those numbers are usually High. water does flush the kidneys out and salt and protein are the enemies in the animal world. Good for you being proactive and looking into this. Lorie
  • omaalyce
    omaalyce Member Posts: 47
    edited August 2020
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    Good Morning Ashera, I have only one kidney due to renal cell carcinoma - in 1993 they removed the right kidney. My numbers have been really good until now. My GFR dropped 30 points in two weeks and my Creatinine is high and my nephrologist isn't sure why. So, he made an appointment for next week for me to see a Urogynecology specialist and is getting n touch with my rheumatology doctor as well to see if one of my meds needs to be changed. I completed breast cancer treatments in 2017 and so I see lots of doctors.

    My team is pretty special and I am so glad about that. My nephrologist is very concerned because he doesn't know the root of what is causing this drop. He diagnosed me with chronic kidney disease several years ago and as I said there have been no issues until now. He restricted my fluid intake because he felt I was over hydrating which is as bad as under hydrating, you learn something new every day because I didn't know that. Anyway, the next step is an ultrasound to make sure there are no masses or stones and then the new specialist will see if there is something else going on. I see her on September 1st and if you like I will do a follow up to this post.

    I understand how frightening this is. Yesterday I had my routine mammogram and teleconference call with my nephrologist. I was excited because for the first time since 2016 I did not have to have an ultrasound after my 3D mammogram and then the call. I am pleased that I only have to wait a week, thanks to my doctor, if I'd called for the appointment who knows how long I would have had to wait.

    I wish you the best and it is awesome that you have taken the role of advocate for yourself-so many don't. We know our bodies and when something is wrong and it is always important to listen to that little voice that is telling you to seek further information. We are here for you!
  • TerriL
    TerriL Member Posts: 60
    edited August 2020
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    I would go ahead and see a nephrologist. They are the real specialists. It may be a drive, but then all my specialists are more than an hour away (no snow though).
  • 2943
    2943 Member Posts: 94
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    I lost my right kidney to cancer in 2016. I drive 2 hours to see my specialists. You can get in there before snows and that opinion will be worth the drive. Hugs!
  • ChicagoSandy
    ChicagoSandy Member Posts: 111
    edited August 2020
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    My creatinine usually runs a little high--and the only health professional who's ever been concerned about it was the MRI tech who administered IV contrast; she did an instant finger-stick test to confirm it was low enough to give me the contrast.

    It's not unusual for one set of test results to be concerning to one provider but no big deal to another. In Feb. my total cholesterol was on the high side (due mostly to good high HDL but mildly high LDL). My PCP (who later died of COVID) was totally fine with it; but in June the cardiology NP I see for weight mgmt. freaked out (over the Feb. numbers) and doubled my statin dose.

    If you're dealing with "dueling docs," maybe ask for a consult with a nephrologist, since it's your kidneys that are the organ involved.
  • Bug
    Bug Member Posts: 390
    edited August 2020
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    Ashera, I don't have any info to share on this but I wanted to tell you good luck and please let us know how it goes. Hang in there.
  • andreacha
    andreacha Member Posts: 196
    edited August 2020
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    Ashera - I'm like Teachertina. I only have 3/4 of a kidney also due to RCC. My GFRs have at one time dropped into the high 30s. I'm back up to mid to high 40s now. And, as expected, my creatinine always runs on the high side. I have all of my MRIs without contrast, however, based upon the radiologist's concern about something being different the last time he has suggested I have another WITH contrast. I see the Oncologist this coming Thursday and I'll find out. I had a great nephrologist/surgeon for both surgeries but didn't have to follow up with him. 6 years after the partial left a mass was seen on the MRI, small, but a mass all the same. I went to see him again and he looked at the MRI and told me he wouldn't touch it as serious damage could be done. That's when I started my oral chemo. I too am considered stage 3 - "moderate" kidney function. I wish you the best in getting all the answers you need. Let us know how you are doing from time to time. Best of luck. We are all here for you.
  • Ashera
    Ashera Member Posts: 94
    edited August 2020
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    Oh my...but all your heartfelt answers were so instrumental in settling my thoughts, even looking at it differently. Thank you so very much! Olmalyce and Andreacha please let us know how your appts go. Looking at a urologist as an everything king of Dr as opposed to a nephro as a specifics Dr...hit really right on. This past week, I chose a podiatrist for a bad ankle as opposed to an orthopedic Dr for that same reason. I do need to find out all I can and if I have to choose one of the 3 available out of town Drs - I find the best one. Can't figure out why I've stayed between the dueling drs all this time - probably just cause I've been so tired of all the side effects that have made so much noise and didn't want another one.
  • Ashera
    Ashera Member Posts: 94
    edited September 2020
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    Saw a urologist last week and knew before I went in what he would say...and we laughed about it. That I needed a nephrologist! But, he gave me an excellent quick study on my GFR numbers and said that when he was in med school - numbers in the 40s were not considered bad at all. But first he said, I needed the first test any other dr would order - an ultrasound of complete renal system. Which is scheduled on 9/17. With that in my chart - any nephro can go from there. I'm thinking it should have been ordered a long time ago...
    He says he treats, or does surgery...after...a nephro does his thing but the different dx's these low numbers in Stage3 could indicate need to be figured out first. The appt I had gotten, had been in mid October but they called last Tues morning with an opening in 30 minutes! I made it! So I've jumped way ahead in the time frame I thought I was looking at. Adreacha and Omaalyce - how did your appts go?
  • omaalyce
    omaalyce Member Posts: 47
    edited September 2020
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    UPDATE: Tomorrow, 9/9/20 I will have a CT Urogram with contrast. I have to bring proof that my creatinine is normal. The specialist is excellent and is looking at both my bladder and my kidney. At the end of this month I will have a cystocopy and urodynamic testing. The CT of my kidney is the first time anyone looked at my kidney in depth. The last time I had it looked at was before my cancer treatments so it's been a number of years. Since I have lower back pain and pain in the area of the left kidney the doctor is looking at several possibilities. She and I both laughed at the fact that if I had seen her first she would have sent me to the nephrologist. Instead he sent me to her. I'm okay with that as she is easy to talk to and explains everything and why she is doing it. I feel that I'm in good hands and just hoping that this gets figured out. I'll update again if I hear anything after the ct scan and let you know later in the month about the other procedures. Thank you for asking.
  • Bug
    Bug Member Posts: 390
    edited September 2020
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    Good luck tomorrow, omaalyce!
  • Ashera
    Ashera Member Posts: 94
    edited September 2020
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    All these free gifts with purchase...after cancer. Sucks.
  • ChicagoSandy
    ChicagoSandy Member Posts: 111
    edited September 2020
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    My ocular oncologist (who recently discovered a uveal--eye--melanoma on almost my 5-yr breast cancer survival anniversary) told me that patients diagnosed with one kind of cancer have a 25% chance of developing another, unrelated, one. (My MO never told me that). The gift that keeps on giving...
  • Ashera
    Ashera Member Posts: 94
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    Oh no...I knew I was at risk for some kind of cancer after whole breast radiation, and my ribcage is in
    lots of pain still...but your eye? I'm so sorry. Double sucks.
  • omaalyce
    omaalyce Member Posts: 47
    edited September 2020
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    Good Morning, Now I have to see an urologist as I have 2 small stones ion my kidney. Since I lost the one to renal cell they want to evaluate further. So I will get to meet yet another new doctor. I know many of you have gone through this as well. It just gets crazy. I have my 2 bladder/kidney tests next week the 22nd & 25th of Sept. Hope everyone has a nice weekend!
  • Ashera
    Ashera Member Posts: 94
    edited September 2020
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    Had a Renal Utrasound yesterday. Scan results were posted online late afternoon. I asked that it not be delayed til dr read it and then...released it to the online portal. It was all...normal...in otherwords, nothing radiologist could see 'physically' by that scan that would connect to the Stage 3 kidney disease...and wrote a referral to a nephrologist would be in order. I felt relieved for some reason - had evidently been expecting to hear there was an atrophied kidney, a large mass, a small mass, or calcium stones. Endocrinologist ordered Parathyroid along with usual TSH (both within range) and another CMP - shows the GFR at 47.
    The Urologist I saw hasn't responded yet - but I see I have 2 letters that are online at "My Health" my electronic online portal to all things...me...so one should be from him confirming he'll need me to see the Big Kidney Person...
    So - I'm letting the feeling that the good news I received about a renal scan...reign supreme for a while. In the past 5 yrs...I realized that nothing ever, scan, biopsy, chemo, radiation, test, lab...nothing has been a positive or good news. I'm going to use this before I read the other letters and need to go in another direction.
  • omaalyce
    omaalyce Member Posts: 47
    edited October 2020
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    UPDATE: My bladder is slightly prolapsed, due to having kids, surgeries etc. nothing to worry about. The scope showed a healthy bladder, always a good thing. I will have a bladder pacemaker implanted to help with the issues I am having with my bladder's overactivity.
    In addition to that the Urologist ordered special blood tests to see if I have a tendency to make stones in my kidney. He's taking a let's watch and wait path to see if the small stones grow. Currently they are so small that they are not a threat but the tests are being done since I only have the one kidney. I do have a benign mass in my kidney that will be monitored when the doctor does an ultrasound in 6 months. It's been there for awhile and I was already aware that it was there.
    I really like these doctors and you all know that is so very important.
    My routine mammogram and 6 month oncology check-ups were great. I was so very glad to hear your renal ultrasound was normal. Take care and enjoy your weekend!
  • Ashera
    Ashera Member Posts: 94
    edited October 2020
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    Thanks all for your responses. I was contacted by a nephrologist who comes to my town instead of a long cold drive of several hours back/forth - Appt is going to be in January. After waiting this long - that time will go by quickly, They conferred with others that because my renal scan was good - there was no need to get in quickly. Yes indeed Omaalyce...if we don't like our doctors - then the deal's off. THEY work WITH us on our bodies and if they do not respect that then I pink-slip them. My 'tribe' I've collected along my journey have all been 'keepers' - So glad your scans were good!

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