What I lack in experience I make up for with dumb questions...

cdnizzle
cdnizzle Member Posts: 10 Member
in Kidney Cancer #1

I'm a recent inductee to cancer survivorship, and I'm bound to ask things that expose my ignorance.  I had a left radical nephrectomy for renal cancer that was about 1/3 the size of my kidney in late 10/2019.  So here goes: what should I expect from my oncologist?  I know so far that I will get CT scans every 6 mos and blood tests, and a discussion of those results.  I also know that I will hand over $600 to have my lymph nodes palpated, and some pleasantries exchanged.  

Despite how rosy a picture my urologist painted about life with 50% kidney power, I most certainly experience physiological changes.  For instance, if I eat a salty meal, which is uncommon for me, I can feel cardiac changes.  NEVER happened before.  I was also informed that I could not have the IV iodine high contrast CT until my creatinine levels are in the right range.  When I went for my colonoscopy, I got to drink an absolutely vile gallon of bowel prep solution that is specially formulated for people missing a kidney.  So it sounds like there are important things for me to know, largely from a dietary perspective.  Should I expect that my oncologist could help me with this?  What's been the group's experience with oncologists? 

Comments

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #2
    Yes, should have an expectation.

    That said, you may not have a very emotional oncologist.  They like to deal with cancer, only.

    There should be a lot more 'splainin' going along with the visits.

    Salty meals causing heart changes is a new one to me.  You should probably have a regular primary care doc to take care of the rest of you-(I'm on 2 BP drugs, a cholesterol med, allergy meds year round and others.)   High salt intake can cause a change in blood pressure and affect the kidney.  The PC is the one most likely to be concerned about your general and overall health that goes along with having had a nephrectomy.

    The creatinine reading is to ensure your remaining kidney will not have a problem with the dye.  But there is a fudge factor.  I have a liter of hydration prior to and after the CT to help the kidney slush the dye.  Ask him is this is a possibility.  There's no way of getting around the barium sulfate, and it can help spot other problems you may develop.

    There are no dumb questions at your point of time.  I'm sure others may have input.

    Click on my user name to see what my journey has found.

    Best wishes and Hugs,

    donna_lee

  • cdnizzle
    cdnizzle Member Posts: 10 Member
    edited February 2020 #3
    donna_lee said:

    Yes, should have an expectation.

    That said, you may not have a very emotional oncologist.  They like to deal with cancer, only.

    There should be a lot more 'splainin' going along with the visits.

    Salty meals causing heart changes is a new one to me.  You should probably have a regular primary care doc to take care of the rest of you-(I'm on 2 BP drugs, a cholesterol med, allergy meds year round and others.)   High salt intake can cause a change in blood pressure and affect the kidney.  The PC is the one most likely to be concerned about your general and overall health that goes along with having had a nephrectomy.

    The creatinine reading is to ensure your remaining kidney will not have a problem with the dye.  But there is a fudge factor.  I have a liter of hydration prior to and after the CT to help the kidney slush the dye.  Ask him is this is a possibility.  There's no way of getting around the barium sulfate, and it can help spot other problems you may develop.

    There are no dumb questions at your point of time.  I'm sure others may have input.

    Click on my user name to see what my journey has found.

    Best wishes and Hugs,

    donna_lee

    Thanks for the feedback

    Thanks, Donna, I do have an appt with my GP (PC) about this stuff.  As a note, I was able to take the oral contrast prep for CT, in that same volume you mention, just not the iodine IV contrast, based on my kidney function numbers.  Hopefully they will yet improve.  

    Anyway, appreciate your response.  As for me calling my questions dumb, well, lets just call them ignorant, as I imagine that for most of us, this is not an expertise any of us wanted, so now we have to go back to school.  I'm ok with that.  

  • cdnizzle
    cdnizzle Member Posts: 10 Member
    #4
    Update

    Went to oncologist today, and CT revealed no cancer and a kidney stone.  I'm happy about the no cancer thing, although that was everyone's strong exectation at this point anyway.  The kidney stone sucks.  Had one of those already, and I know it sucks.  Since this has popped up between CT scans, which were 3 mos apart, I wonder if I will experience this pure joy every few months.  

    For people who've had a radical nephrectomy, have you experienced an increase in frequesncy of stones?  I sure hope not.  

  • en8236
    en8236 Member Posts: 30 Member
    #5
    cdnizzle said:

    Update

    Went to oncologist today, and CT revealed no cancer and a kidney stone.  I'm happy about the no cancer thing, although that was everyone's strong exectation at this point anyway.  The kidney stone sucks.  Had one of those already, and I know it sucks.  Since this has popped up between CT scans, which were 3 mos apart, I wonder if I will experience this pure joy every few months.  

    For people who've had a radical nephrectomy, have you experienced an increase in frequesncy of stones?  I sure hope not.  

    Uric acid/protein intake

    I had high uric acid, which can cause kidney stones. High protein intake can increase uric acid level as well. They gave me allopurinol as maintenance medication to control uric acid level since I have one kidney. Something worth checking for?

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #6
    Our experience with

    Our experience with specialists is that they focus on their own specialty.  I love specialists because of their experience and knowledge base, but it still is important to have a central Doctor, a GP, or internist to see the big picture, and help guide you.  Find a great one that spends time with you.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited February 2020 #7
    My spare is working fine.

    The spare supposidly has 40 years of treADWARE WITH 17.5 years since the Nepj. I also take allipurinol as I had a BOUT OF gaut about 10 years ago.

     

     

     

     

    icemantoo

  • cdnizzle
    cdnizzle Member Posts: 10 Member
    #8
    This is great...

    Thanks for all the feedback.  I have been referred to a nephrologist who I am hoping can resolve a lot of these issues/questions, and prescribe anything necessary to avert the stones, as well as consulting with me on diet.  I still have an appt with my GP that I set up for this as well, if I feel like I need more guidance, etc.  My blood pressure is still a big concern, and I imagine either the nephrologist or my GP could prescribe something for that. 

    My remaining kidney's function has actually improved since the last bloodwork was done, so that's good.  I just have to protect that remaing real estate.  

Discussion Boards