New member. Right kidney removed 2 weeks ago.

Chicksandhens
Chicksandhens Member Posts: 4
edited December 2019 in Kidney Cancer #1

I just had my right kidney removed two weeks ago.  I have a six inch incision and three small incisions.   Test results came back positive for cancer but all margins were clear.  I only stayed one night in hospital after surgery.  I went home reluctantly but I passed all requirements to leave.  For the most part I am doing well and resting.  I still have some pain usually in the top three small incisions area.  It helps if I press on the incision area.  I think getting up out of bed hurts the worst.  I am an active person so all of this resting is tedious.  I am nervous about my diet now that I only have one kidney.  It seems like the food I like the most are no..no's.  Such as avocados, nuts, bananas, spinach, swiss chard, whole eggs and dairy.  

Do any of you follow a special diet after having a kidney removed?  Are there other limitations or things I  should avoid? TIA.

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Comments

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    Hopefully the worst is behind you.

    The first  few weekd are the hardest. I lostt lefty almoost 17 and 1/2 years ago. Ninety days ago they  took out  my Prostate as well.   At 76 and  1/2 I am going to try and stay away from Cancer.

     

    How big was the little buggar.

     

    Welcome to the club where no one volunteers to  join.

     

     

     

     

     

    icemantoo

  • stub1969
    stub1969 Member Posts: 954 Member
    Welcome!

    I'm happy you found us.  To answer your question, I don't follow any special diet since my surgery.  But--if your doctor has given you directions about what and what not to eat, please follow that advice.  If you do a google search, you'll get all kinds of recommendations and advice....many of which have no scientific value.  Moderation and common sense should be the driving force to your diet.  I'd also encourage you to drink plenty of water (I drink close to a gallon of water per day).

    Beyond the diet--I'm curious about the details of your RCC.  Size, subtype, and pathology details.  Where are you being treated? 

    Again--welcome! 

    Stub

  • Chicksandhens
    Chicksandhens Member Posts: 4
    edited December 2019 #4
    stub1969 said:

    Welcome!

    I'm happy you found us.  To answer your question, I don't follow any special diet since my surgery.  But--if your doctor has given you directions about what and what not to eat, please follow that advice.  If you do a google search, you'll get all kinds of recommendations and advice....many of which have no scientific value.  Moderation and common sense should be the driving force to your diet.  I'd also encourage you to drink plenty of water (I drink close to a gallon of water per day).

    Beyond the diet--I'm curious about the details of your RCC.  Size, subtype, and pathology details.  Where are you being treated? 

    Again--welcome! 

    Stub

    I have not talked to my

    I have not talked to my surgeon yet, but I did get this information about my results online from the hospital.  BTW I had surgery at Huntsmans Cancer Hospital.  

     

    I am not sure exactly what it all means, but here are the results: Radical nephrology chromophobe renal cell carcinoma test positive.  4.5 cm, margins negative.  Ckit/CD 117 test positive, value SPF1, amount removed 16 × 8 × 5.4 cm. Tumor pushed into renal sinus fat with possible gross invasion.  Primary tumor pT1b.

    I am drinking plenty of water with lemon and trying to eat healthy.  Walking is my only excercise so far.  Looking forward to living cancer free from now on....

  • Chicksandhens
    Chicksandhens Member Posts: 4
    icemantoo said:

    Hopefully the worst is behind you.

    The first  few weekd are the hardest. I lostt lefty almoost 17 and 1/2 years ago. Ninety days ago they  took out  my Prostate as well.   At 76 and  1/2 I am going to try and stay away from Cancer.

     

    How big was the little buggar.

     

    Welcome to the club where no one volunteers to  join.

     

     

     

     

     

    icemantoo

    Hello

    17 1/2 years ago...that is great news!  Sorry to hear about the prostate cancer.  The tumor itself was 4.5 cm.

  • stub1969
    stub1969 Member Posts: 954 Member
    You're a Chromie!

    I'm a chromie, too.  Chromophobe RCC (in general) tends to be indolent.  I was looking for words in your pathology that may suggest otherwise such as sarcomatoid features.  Since you don't have those listed, I'm assuming it was not in your pathology.  This is a good sign.  At 4.5 cm, and listed as stage 1, the odds are on your side.  It is vital to be faithful to your scans in the future.  Is your first one at 3 months or 6 months out?

    Stub

    FYI--if you click on a person's "name" you can read about their journey.  I'd encourage you to fill out your "About Me" information so others can read about your story.

     

  • Chicksandhens
    Chicksandhens Member Posts: 4
    stub1969 said:

    You're a Chromie!

    I'm a chromie, too.  Chromophobe RCC (in general) tends to be indolent.  I was looking for words in your pathology that may suggest otherwise such as sarcomatoid features.  Since you don't have those listed, I'm assuming it was not in your pathology.  This is a good sign.  At 4.5 cm, and listed as stage 1, the odds are on your side.  It is vital to be faithful to your scans in the future.  Is your first one at 3 months or 6 months out?

    Stub

    FYI--if you click on a person's "name" you can read about their journey.  I'd encourage you to fill out your "About Me" information so others can read about your story.

     

    Thank you.

    Thank you for the information.  I did blood work this past week and I am having a CAT scan on April 13th.  I am going to have to find out more about the test results.  I will go in and update my personnel information in a day or 2.

     

    Just reread my test results.  It said that sarcomatoid features were NOT identified.  

  • AliceB1950
    AliceB1950 Member Posts: 186 Member
    If your incision is bothering

    If your incision is bothering you, I suggest a folded soft sock between it and your clothes.  My incision wasn't that big (I have no idea how they got a 7 cm tumor and a whole kidney through those small openings!), but it was near enough to my waistline that my clothes pressing there were uncomfortable at times.  That sock was my best friend!

  • donna_lee
    donna_lee Member Posts: 1,024 Member
    You were "lucky"

    Yes, the surgery makes you hurt, and twisting your abdominal muscles even more so.  It will pass.  Warm, not hot showers with a finish of almost cool water to avoid stimulating the itch response helps.  As long as the incision is not draining, paper tape a large guaze pad over it to prevent it from rubbing on clothing.  The favorite foods, I can't help with-but eat a balanced menu, drink plenty of water to keep the remaining kidney going well; but avoid foods that constipate so you don't have to strain.

    I was in your shoes 13 + years ago with a 14" slice that removed more than the R. kidney.  You have traded a kidney and a short amount of pain with boredom for a much longer life.  Considering all that, it's a pretty good trade.

    Hugs and a nice, steady recovery,

    donna_lee

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Im trying to figure out why

    Im trying to figure out why the foods you listed are no-no's.  Who told you that?   They seem good to me.

    The only huge no-no that I am aware of is Ibuprofen.  Dont take it.  And having only one kidney dont do a high protein diet.  Low sodium can be beneficial too.

  • APny
    APny Member Posts: 1,995 Member
    edited January 2020 #11
    Yes, I was wondering the same

    Yes, I was wondering the same thing. I was only told to avoid Ibuprofen. No diet restriction.

  • cdnizzle
    cdnizzle Member Posts: 8
    edited February 2020 #12
    The confusion around diet is

    The confusion around diet is one of the main reasons I ended up here.  I was given no retrictions, and to date, I had never heard that ibuprofen was bad, and in fact used that instead of that wretched oxy they prescribed after surgery.  I know from my bloodwork that my sodium is out of the normal range post-nephrectomy (radical), and my blood pressure increased.  So, to me, low sodium diet is obviated.  I asked my urologist about this, and got a shrug, and advice to call my regular doctor.  I'm glad that guy is in the rear-view mirror.  I'd like to know if common salt substitutes like potassium chloride is ok.  I'd like confirmation on the benefits of lowering protein.  And I echo the lack of value consulting Dr Google for this, unless you enjoy being confused.  

    I also wonder if some degree of patience is warranted.  My nephrectomy was 10/26/19, so I'm still hoping the remaining kidney kicks in a little more over the coming months and picks up the slack a little bit more.  Time will tell, I guess.  

  • AliceB1950
    AliceB1950 Member Posts: 186 Member
    My potassium levels were too

    My potassium levels were too high for a while, and I learned that those of us with one kidney have to be a bit cautious when it comes to high-potassium foods.  Potassium chloride is one of the worst.  Use herbs and spices if you're cutting down on salt.  I scheduled a session with the nutritionist in my primary care doctor's office a while back.  My potassium numbers are okay now, but I'm kind of careful to not eat too many high-potassium foods the same day.  You need regular blood tests to see how your kidney function numbers are behaving, too.

  • cdnizzle
    cdnizzle Member Posts: 8
    edited February 2020 #14

    My potassium levels were too

    My potassium levels were too high for a while, and I learned that those of us with one kidney have to be a bit cautious when it comes to high-potassium foods.  Potassium chloride is one of the worst.  Use herbs and spices if you're cutting down on salt.  I scheduled a session with the nutritionist in my primary care doctor's office a while back.  My potassium numbers are okay now, but I'm kind of careful to not eat too many high-potassium foods the same day.  You need regular blood tests to see how your kidney function numbers are behaving, too.

    Thanks, Aliceb1950.  I am

    Thanks, Aliceb1950.  I am being watched closely by my oncologist, and have scheduled an appointment for next month with my GP.  I figure the GP will refer me to eiher a nephrologist or nutritionist, or maybe I can get the oncologist to do that.  My K+ levels were right in the middle of the normal range, which is why I thought salt substitutes would be ok.  While previous CT scans were clean for cancer, it doesn't mean physiologically everything is ok.  I just experienced some mild pain in my remaining kidney while out walking my dog.  So clearly I'm doing something wrong.  

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    cdnizzle said:

    Thanks, Aliceb1950.  I am

    Thanks, Aliceb1950.  I am being watched closely by my oncologist, and have scheduled an appointment for next month with my GP.  I figure the GP will refer me to eiher a nephrologist or nutritionist, or maybe I can get the oncologist to do that.  My K+ levels were right in the middle of the normal range, which is why I thought salt substitutes would be ok.  While previous CT scans were clean for cancer, it doesn't mean physiologically everything is ok.  I just experienced some mild pain in my remaining kidney while out walking my dog.  So clearly I'm doing something wrong.  

    diet

    My husband was given dietary information when he was discharged from the hospital.  It was specific to having one kidney.  The interesting thing for me is that my husbands kidney function blood tests are better than mine.  I'm younger, and have 2 kidneys.  Turns out I was consuming too much protein, and when I changed my eating habits the levels returned to normal.  My kids also messed up their lab values by doing the Keto diet which is high protein.  A good rule in my mind is everything in moderation.  Your GP could refer you to a meeting with a nutritionist.  I actually called the dietician at our local hospital and made my own appointment.  Paid $40 for 1 hour of her time.  

    My husband decided that maybe he should meet a nephrologist to see if they had any helpful advice.  We weren't impressed, but did learn No ibuprofen, and to be careful with protein and salt.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    The most common reason for

    The most common reason for having a low sodium level is due to fluid retention.  Of course there are other reasons too, but this is the most common

    When a person has high blood pressure the docs always tell the person to limit their salt intake.  If that doesn't work, BP meds are necessary.    Another way to wreck your kidneys is to live with untreated high blood pressure.

    I think it would be great for you to have a smart GP that will help you with your overall health, and analyze with you what all these other doctors are telling you.

  • JeffreyLaw
    JeffreyLaw Member Posts: 9
    edited June 2020 #17
    I'm not on here much, but

    I'm not on here much, but noticed you had surgery at hci.  Who did your procedure?  I had Dechet do mine about 18 months ago and couldn't be happier with the outcome.  Heading back to HCI Monday for follow-up scans.

  • JeffreyLaw
    JeffreyLaw Member Posts: 9
    edited June 2020 #18
    I'm not on here much, but

    I'm not on here much, but noticed you had surgery at hci.  Who did your procedure?  I had Dechet do mine about 18 months ago and couldn't be happier with the outcome.  Heading back to HCI Monday for follow-up scans.

  • donna_lee
    donna_lee Member Posts: 1,024 Member
    I just had a refresher course with a Nephrologist

    My eGFR (estimated Glomular Filtration Rate) of the one kidney has slowly dropped since it was removed in 2006. 

    1-Do NOT use NSAID's as they are filtered thru the kidney. Bad!  Do use Tylenol (Acetaminophen) as it is filtered thru the liver.

    2-Watch sodium and potassium intake in foods as they can cause an imbalance in fluid retention.  And all fluid is filtered thru the kidney before it goes to the bladder.

    3-Stay hydrated and water is the best.

    4-I'm not ready for dialsys. Yeah!!

    5-If you are not seeing a PC Doc or Internist and on blood pressure meds, you probably need to see one, as controlling BP is essential.

    Good luck, again

    donna_lee

  • jazzgirl
    jazzgirl Member Posts: 224 Member
    edited June 2020 #20
    Welcome Chicksandhens!

    Glad to hear you are on the recovery side of surgery. As you can see you will get lots of support and input from your new friends here. I'll add my two cents. I was born with one kidney, then had partial nephrectomy on the one - so I was pretty anxious about nutrition and probably went a bit overboard in the first year or two. I see a nephrologist, and as lab results stay stable (twice a year) and she is comfortable with the results, some things have added back in or relaxed. Sodium is the main thing I watch, and have cut down on protein (both hard initially for this carnivor.) Potassium can be an issue, and I think that is why the list of things you mentioned (avocados, nuts, dairy, dark greens, etc.) It really helped me to meet with a nutritionist/dietician initially - like through a hospital - and get an idea of what foods are high in what and which ones affect kidney. I've added back in everything you mentioned over the past two years and numbers stay stable. Other things I agree with - plenty of water (my nephrologist asks me to drink enough to eliminate 2 liters a day... which I don't always accomplish, but keep drinking) and the lemon you mention is good for avoiding stones. No ibuprophen! Someone asked about salt substitutes - too much potassium; I found Italian spice blend with no salt. Looks like AliceB and I took a similar learning path with nutritionist, hearbs and spices. But I wish I had been on here earlier to see her suggestions for soothing the scar! I also find the site davita.com really helpful - see the tabs "education" and "Diet & Nutrition." Balanced diet - moderation. As always, definitely check all these out with whatever healthcare provider you trust and becomes your regular go-to knowledge source. 

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited June 2020 #21
    Add diet to heading?

    There is such wonderful information on this post re diet.  I wish it was more clearly visible, or easily found.  Perhaps add to the title.

    Maybe I dont know how to flag a post to keep track of it.  Any suggestions are welcome.