Dumb question: If my cancerous (presumably diseased) kidney is gone, do I have kidney disease?

TillieSOK said:

 Me, too.  I'm just sitting

 

Me, too.  I'm just sitting here reading and learning more and more...and definitely more than my doctor has ever told me.  He came in after the surgery and said "well, you know you have cancer, don't you?  It is called renal cell carcinoma."  I said "okay...what KIND of renal cell carcinoma?"  He looked at me like I had suddenly sprouted two extra heads and said "oh...it's, uhh...Chromophobe, which is the best kind to have if you have to have it at all."  No stage, no nothing, just told me that he got clear margins and that the tumor, while totally encapsulated inside the kidney at the midline, had started into the renal vein, But that was of no consequence."  That's ALL he told me.  I'm going to see if I can get a copy of my path report from his office.  Isn't he supposed to supply me with a copy, if I ask?  I may have to smack a doctor if he says I don't need that report. 

 

I hope one day I can be as informed and knowledgable as you all are on here.

Hi Tillie, I seem to be in the same boat as you, in regards to a lack of communication from my doctor.  I too, have learned what I know, from the wise men and women on this forum.  What I didn't know until reading thru this chain, is, I should probably know my kidney function!  It never occured to me to ask.  I had a radical nephrectomy, right kidney, on May 29, 2013, diagnosis, clear cell renal cell carcinoma.  If the function of my left kidney has been tested, I am not aware of it.  Is it a blood test? 

As for whether or not RCC patients who have lost their cancerous kidney have kidney disease, my doctor told me that although I do not have kidney disease, I am to be treated as though I do.  In other words, if a food or medication is contraindicated for people with kidney disease, I should avoid it.  He also suggested I have my pharmacy "flag" my account, as an extra precaution, which I have done. 

I think I'll do what Ann did and get my surgery and pathology report.  I'm sure it'll make for some interesting reading and I bet I'll learn a thing or two!

Finally, since my surgery, I have developed an insatiable hunger for sweets.  Almost a craving, I'd say.  Over the past year and a half, I have lost 75 lbs.  If I don't get a grip on this sweet tooth, I'll be right back up there, tipping the scales.  Is this normal?  My doctor says yes.  His explanation...it's normal to crave what we can't (or shouldn't) have.  At any rate, he didn't seem too concerned when I told him I'd polished off a whole pkg of Oreo cookies, by myself, in less than two days!  His lack of concern led me to think diet wasn't any more or less important after a nephrectomy vs before.  I can't help but wonder if other post neph patients experienced a post neph sweet tooth.

Without sounding grateful that all those on this site are, in some way, affected by kidney cancer, I am so thankful there are people out there willing to share their experiences.  For, as little as I know about kidney cancer, I'd know even less if not for CSN and it's wonderful participants.

Sindy

Great question and I really enjoyed reading the very intelligent and reasoned responses.

I would like to add that my nephrologist (who teaches at the medical school and has authored text books and is an expert on measuring kidney function) wrote on my diagnosis following my nephrectomy and visit "Chronic Kidney Disease". I forget what stage he gave me....My left kidney is working fine. I asked him what that meant and he said "it means your overall kidney function in comparison with a normal person with 2 healthy kidneys is not as good and it needs to be followed". Hmmm. Ok.

Some of this is semantics I suppose. Of course our blood work is off because we have one kidney! And that's their simple definition of CKD....

On the deodorant front, I'm extremely allergic and have been since my early 20's. I keep myself clean, and that's the best I can do. If someone is offended, their problem not mine. Same goes for my lack of hair on my head. Haha. And I take CKD to mean: watch my remaining kidney, but I don't worry about it that much. I stay away from salt, NSAIDs, too much protein,  and watch my blood pressure and blood sugar. I think that's good enough. Oh, and I see my nephrologist every few months and let him look at my blood work.

I do put CKD on my health forms when I fill them out for a new doctor, mainly because I don't want him missing the fact that I have one kidney when he prescribes medication for me! I figure the more places I put information, the more likely they are going to pick up on what is going on. They aren't paying really good attention all the time. Have you noticed that about doctors?

Todd

TillieSOK said:

I'm getting ALL my test/CT

I'm getting ALL my test/MRI/CT results and my pathology results!  YEAH!!  I also went to my pain mgmt doctor for a shot in my hip and had him look at the MRI on my back from 3 years ago....you know. Just to see if anything had showed up back then. (The MRI was done because of chronic low back and flank pain in Louisiana). Anyhow, the scan DID show my kidneys and voila'!  the tumor was very visible back then!!  Why the heck don't people who read those things look at EVERYTHING on the scan instead of just one or two little spots?  This could have been caught and taken care of THREE years ago!!!  P*sses me right off!

Hi Tillie, Snap! That is exactly what happened to me, my tumour was missed over a 3 yr period. I had regular check ups each year from having a previous episode with kidney cancer. The tumour was missed each time until last December when I had an MRI. Angry does not come close in describing how I felt, so I know where you are coming from.

Djinnie

anmazon said:

To Tillie and Djinnie

I can't begin to imagine how you must be feeling.  To know that the tumors were visible on scans 3 years ago and MISSED?

  I am eternally grateful for the fact that I have known and worked with my team of docs for nearly 20 years. Though I never expected to be on the receiving end of their tender mercies.

Reading your posts, I appreciate how very fortunate (even blessed, if you'll forgive me).

Please know that you are both in my thoughts and prayers.

Warmest regards.

Annie

Thanks, Annie.  I had the MRI done back in LA before we moves to FL, and when my pain mgmt doc here in FL looked at it the other day....heck, Ray Charles could have seen it with one eye closed!  That sucker was sizeable back three years ago!  I'm not a doctor, have never played one (on TV, anyway..wink! wink!) and haven't stayed in a Holiday Inn Express recently, and I had NO trouble seeing it before my dr pointed to it and said..."Damn!  There it is!"  From the size, I figure and so did he, that it has probably been hitching a ride for about 10 years or more.  One great thing about Chromophobe is that it is reeeeeeaaaaaallllll slow growing! 

anmazon said:

I know i shouldn't be giggling,

But, Tillie, your post absolutely slays me!  

Not only are we two tall chicks, but we're both wildly irreverent with twisted senses of humor.

If laughter is the best medicine, you and I are well on our way down the road to recovery.

(And if I could please, please, please borrow your Ray Charles line?)

Warmest regards.

Annie

As we say here in the Deep South..."it's all you'rnn".  Annie, I figure if I can't laugh, then I have to cry and I am butt ugly when I cry.

TillieSOK said:

 
Thanks, Annie.  I had the

 

Thanks, Annie.  I had the MRI done back in LA before we moves to FL, and when my pain mgmt doc here in FL looked at it the other day....heck, Ray Charles could have seen it with one eye closed!  That sucker was sizeable back three years ago!  I'm not a doctor, have never played one (on TV, anyway..wink! wink!) and haven't stayed in a Holiday Inn Express recently, and I had NO trouble seeing it before my dr pointed to it and said..."Damn!  There it is!"  From the size, I figure and so did he, that it has probably been hitching a ride for about 10 years or more.  One great thing about Chromophobe is that it is reeeeeeaaaaaallllll slow growing! 

Tillie,

You just gave away your generation when you quoted the old commercial with Bernie Kopell and the anti snore patent medice he pushed!  LOL  Of course so did I just now!

I guess your doctor just demonstrated the accuracy of the old "Peter Principle." A personis promoted to their highest level of inefficiency!

Good luck!

Michael

Texas_wedge said:

Missed on CT

I can imagine how brassed off you both are but, in fairness, it's all too easy to miss something you're not looking for in a scan when you see what you are looking for and have limited time for study.

However, it is a stark warning isn't it!  I never realised how little time radiologists are typically allowed to look over a scan and make out a report.  That seems to be what's wrong.  When you know that, you know not to be so trusting, don't you?

A comment to Tillie - yes it's great that chRCC is so slow growing UNLESS AND UNTIL it turns sarcomatoid. That you don't want.  After mine did, the rate of growth increased by 100 times or more, such that a sizeable tumor can grow from nothing in a matter of weeks! 

Hi Tex.  I got my path report today, and it did say that there was no evidence of sarcomatoid.  That's not all it said, but I'm not sure I'm ready to actually put it down on "paper" just yet.  Suffice it to say, I'm even more p.o.'d at my doctor who didn't tell me the facts than I am at the radiologist who missed the tumor 3 years ago.  Three years pales in comparison to what I'm feeling right now.

MDCinSC said:

Affectionately known as . . .

THE BERMUDA TRIANGLE!!

That's for sure! Lol

anmazon said:

Terrible Trio

Mr. Wedgie, 

Yeah!  Look out world.  Annie, Alexandra and Tillie!

Triple Trouble!

Annie

Annie, Alex, and TIllie, oh my... Annie, Alex, and Tillie, oh my..!!