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learning from my mistakes

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi all,

Next Wednesday, I am flying into OKC to have my first scan since surgery, 6 months ago.  And by scan, I mean chest x-ray.  I also will be having my 2nd bloodwork, that same day.  I can only assume the first bloodwork, done at my 6 week post-op visit, was all well and good since I never heard otherwise.  In fact, I never heard anything.  Which is what has prompted this post.  I'm trying to learn from my mistakes.

Being new to this and completely naive and trusting of my doctor, I assumed he'd tell me stuff on an as needed basis.  And, that no news is good news.  It wasn't until I began reading thru the many different threads on CSN that I started realizing many of you know exactly what your kidney function is.  I have no clue what mine is, nor did it occur to me to ask.  Months later, I did get copies of my lab report but I could not find my GFR (?) anywhere on it.  Is kidney function testing something I have to ask for?  It sounds important enough that I shouldn't have to ask but, maybe I do.  It begs the question, what else should I know?  What knowledge should I gain from my bloodwork, besides my GFR?  Maybe nothing.  I don't know, so I'm asking you all.  I know if TW were here, he'd guide me and advise me. Frown 

My goal here is to be better informed going into this appointment than I was the last, in hopes of walking away from the appointment with the confidence that I have done all I can, to be proactive.  I will no longer sit quietly and let the chips fall where they may.  I will stand up for myself and I will have a voice!  GOOOOO MEEEEE!!!

Thanks y'all!!

 

icemantoo's picture
icemantoo
Posts: 1593
Joined: Jan 2010

Sindy,

 

Don't worry. I never got into this GFR stuff until I saw A Nephrologist 8 years after. Unless you have high blood pressure or diabetes or something else negatively affecting your Kidney, while your GFR may be a little lower than normal from the Neph. it should not be that low at your age. It will go down as you age anyway. While normal may be 90 or above, those of us with a neph. are hoping for as much above 60 as possible.

Please take my medical estimates with a grain of salt.

Icemantoo

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Iceman,

Nor should I have had kidney cancer...at my age.  I'm not diabetic and my blood pressure has always been on the low side, however, I am packing a few too many lbs.  At any rate, I think I need to be better informed about my health and the affects of living with one kidney.  

 

And speaking of salt, I have got to cut back!!

Thanks so much for your thoughts!  I always value your advice. 

angec's picture
angec
Posts: 626
Joined: Mar 2012

Sindy, don't feel too bad. The average person doesn't start out "knowing" everything about RCC. It takes alot of looking into and speaking with those that have experience with treatments etc. I didn't see anything about your path report. How big, what type, any spread etc. You may have posted it somewhere but i missed it.  It is still early in the game for you so you have enough time to learn the ropes! ;)

You want to get cbc, check for creatine, BUN, GFR, and then they usually check (for my mom anyway) the minerals, vitamins, thryoid, liver function (if not included in regular tests). Have your urine tested in office and then sent off to the lab too.  People with one kidney at times can get uti's often and not even know they have one.  Besides that, regular whole body pet/ct scans. How often depends on the path report, tumor type, grade etc.  You need to find a good GP and Oncologist.  My mom has all of her tests done by gp then follows up with Oncologist for scans every three months.

 

As far as your experience with the doctor when you first found out about your "cyst"... i am not surprised. I have been having pains in my kidney's since March of last year when my mom was diagnosed.  I had issues with stones but the first doc didn't tell me i had a stone, he just said the report was ok.  I got a copy for my files and surprise! I saw the stone. I was able to get rid of it by taking natural products and it passed. But he didn't feel it was anything i should know, he was after all, just checking my ovary cysts.  

That has happened to me numerous times. Where they check one thing and fail to mention things that don't pertain to their type of doctoring. Rule of thumb...I get a copy of ANY test that was done. Even if it is a blood test, uti test.  A couple of weeks ago i went to the Urologist to see what this pain in kidney still is.  He took sonogram and said all was normal but i want to check your bladder. Ok, so i grab a copy of the reports on the way out, go home and read them. Low and behold, i have water in not one, but both kidneys.  Not a mention from him!  Now i know what i have to do to keep up with this. But he never said a word. Normal is not water in both kidneys. I dont' trust any of them and what they think is nothing serious should still be mentioned. Good thing you got your records and went on to bring them to your doctor. So, you see, you are not so out of the loop as you think!  Now, I am hoping that the Cyst was small and all is clear.

TW is not with us anymore on the boards, but he is with spirit. And he has left alot of information behind. I am sure if i left anything out there are others that will chime in and let you know what i missed. And if i remember anything else, i will post also.

Are you on Smart Patients?  If not, sign up and start reading up there. They are very experienced and know alot. They use to run the ACOR before that board shut down.  You are not alone, Sindy. We are all here for you, along with your sons and your husband.  Don't think too hard about it, just pick up and move on.  And yes, cut down on the salt and drink plenty of water with your meals! ;)

angec's picture
angec
Posts: 626
Joined: Mar 2012

One more thing Sindy. An xray is not a sutstitute for a pet scan. Xrays don't always pick up mets.  To me, it a normal routine check up thing, but when you have had RCC you want a scan.  So, if you an arrange that I certainly would.  There has to be a way to get in to see an Oncologist. 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

angec, thanks so much for offering your thoughts! 

As for the particulars of my RCC, it was Clear Cell, stage 1 grade 2, 4.7cm.  It was contained and margins were clear.  I understand there is little risk of recurrence.  Knowing that doesn't ease my fear and anxiety of recurrence, because, there was little risk of me getting it in the first place...but I did.  So, percentages mean nothing to me. 

I hadn't heard of Smart Patients until recently.  I haven't had a chance to check it out yet as my work schedule is tripled the last couple months of the year and I'm just too pooped once I get home at night.  But, as soon as things slow down, I'll check it out.

I agree wholeheartedly that an x-ray is not sufficient.  But it is cheaper, and since insurance rules the world, they will dictate what tests are covered regardless of what tests may be warranted.  I am so very thankful to have insurance, I just wish the insurance companies would stick to what they know and quit practicing medicine.  They have way too much power. 

I wish I could just pick up and move on but, easier said than done.  I just can't shake this deep down feeling in my gut that something's wrong.  I can't explain it.  I've never felt it before.  Maybe it's a psycological side effect of having had cancer, I don't know.  But, I finally got a referral to see an oncologist.  I don't have the appointment yet, but it's a start.  I'm hoping to see him/her before the end of the year because my insurance deductible and out of pocket expenses have been met.  I think just seeing a specialist will help calm my anxiety.  I've never been an anxious person before, and I don't like being one now.  It's so out of character for me.  Cancer changes you in so many ways!

As for water in your kidneys, wha???  I didn't know that was possible!  By water, do you mean fluid or, is it actually water like, h20?  And, how does one get water in their kidneys?  I'm guessing there's no treatment since the doctor didn't even mention it.  Maybe it's reabsorbed by the body???  I'll have to google that one, it's news to me.  Bless your heart!!

How's your mom doing?  It sounds like you've gained a lot of knowledge about RCC, through her battle.  She's lucky to have you! 

 

 

angec's picture
angec
Posts: 626
Joined: Mar 2012

Sindy, grade two stage one is not very bad at all! Clear margins are good! The size is still small too.  I think once you get the scans you want you will feel much better.  I know that once you get a cancer diagnosis it turns the whole world around.  I hate the word!!  Since my mom was diagnosed i cannot even go for a simple blood test now, my nervs are totally shot.  And I am only the caregiver!  The water in the kidneys might be from a bad kidney infection i had in September and wasn't notified until October that i had it. So it went on for two months untreated because the docs office didn't send me the reports on time. The office uti showed that the urine was clear.  I am hoping that is why the kidneys swelled (with water).  There was no blockage that could be seen on the Ultrasound so i have to have another ct scan and the bladder scoped.  I also deal with kidney stones and that may have caused the infection. Thanks for your concern. Don't bother looking it up, you have no time for that and why should you bother with it. Just think positive thoughts.  You are on your way to see the Onc which is good. And I am sure your instinct will turn out to be wrong and all will be ok.   I am taking homeopathic to deal with the kidney right now, especially since the docs offered nothing for it!  Go figure!  LOL

My FIL died from Leukemia ten years ago and my SIL 47 has Uterine cancer.  I have several friends who have it as well. That is  a word that is spoken of daily around me.  Hate it! But I believe you will be fine!  By the way, about 30+ years ago I worked with a girl that looked exactly like you. The same everything, so if that is you in the picture, you have a double out there!  When i first saw the pic i was wondering if it was she. But i see you are not in NY so it is not you!  Beautiful woman you are too! ;)

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

You are too sweet!  Beautiful isn't a word used to describe me, usually...but I'll gladly take it!!  And no, I'm not in NY.  But, I must have a very generic face.  If I had a dollar for everytime someone told me I look like someone they knew, I'd be rich!!  This picture was taken at a Thunder game in Cleveland, last February so, it's fairly recent.  

Like you, I have been surrounded by loved ones with cancer.  Sadly, they have all passed on.  My parents died 9 months apart, daddy had colon cancer and died just 6 weeks after diagnosis and mama's primary was undetermined.  We thought at the time, that it didn't matter where it originated.  Knowing wouldn't change the fact that she was going to die very soon.  Cancer was found pretty much throughout her body.  There was no treatment, no surgery.  Now that I'm almost 50, just 12 years younger than when she died, I wish I knew exactly what kind of cancer killed her. For all I know, she could have had kidney cancer.  She lived just shy of 9 months after diagnosis.  Both my dad's parents and my mom's dad all died from various types of cancer.  Two of my mom's 4 brothers died with lung cancer.  It's in my genes and there's no escaping it.

So, I always knew I'd have it too but, just didn't think it would be at 49.  I suppose though, my parents must have had theirs many many years, to have died so soon after it was detected.  I can totally relate to how you feel about your mom having cancer and wondering if it's in your genes.  Hopefully, if you're like me, you have regular mamograms, colonoscopies and bloodwork.  It's all about prevention and early detection!!  I guess I shouldn't assume you're old enough for these tests...

 

Hope your feeling better soon and your kidneys dry out Laughing.

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