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just had a nephrectomy, unsure about future care

a_c
Posts: 4
Joined: Mar 2015

I had a radical nephrectomy (though just the kidney, no adrenal gland or anything else) 2 and a half weeks ago, to remove a renal cell carcinoma. I know I am very, very lucky since it was caught at 5 cm and looks like it was completely encapsulated in the kidney.  Still, I went from not knowing there was even an issue with my kidney to the operating room in 13 days.  Definitely a lot to process very quickly.

 But like I said, I realize a lot of people here have it worse and I am thankful that I was lucky.  Anyway two questions that I thought someone might be kind enough to answer:  

1.  My urologist is very good, but seems to be more the kind of the hotshot surgery-focused guy rather than the long-term care focused, so I feel a little adrift.  According to him my life should go back completely to normal, no dietary restrictions or anything, but I definitely want to be very careful with my kidney.  I haven't been able to find much resources online about long-term kidney care as opposed to immediate post-surgery care.  Are there any good books or resources for that sort of thing?

2.  As a side note, I had a kidney CT scan 6 months ago (they thought I might have kidney stones, but turned out to be an infection) and the doctors did not find the tumor.  Is that strange?  I offered to get that CT scan but the current urologist said there was no need.  But I'm a little freaked out that maybe I had some super fast growing tumor.  Does anyone who's done the research know how fast RCCs can grow?  I'm hoping the doctors over the summer were just incompetent.

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

Until you get all your path results back with staging, type of cancer, etc. not even your Dr. can give you a prediction.  Then you will be put on some kind of regular schedule for monitoring, which inclludes labs that monitor kidney functions and some a CT or ultrasound.

The availability of an oncologist who is more ready to follow you long term-as opposed to (in my opinion) a urologist who seems to want to "cut and say cured," would by my choice for a continuing care specialist.  Of course, if there are other issues involved, i.e. blood pressure meds or other meds, you should be under the care of a primary care (PC) doc.

Self advocacy is now your chance to be "in charge."  Because once cancer is Dx'd, you often feel out of control of your life.  Ask questions, ask why, get the explanation that you understand...and ask again.  Make the RN an ally.  Get copies of all your test and lab results.  Use the internet to look up what each lab test result means.  

Two big ones that will pop up are Creatanine and eGFR for you. Creatanine is the waste product of protein use by your body, with excess being filtered in the kidney and going out in the uring.  eGFR is the Glomuralure Filtration Rate, or how well the little tiny tubules within the kidney are cleaning up the bodies waste products.  If one rate goes up, the other goes down, and vice versa. The eGFR average goes down a little bit the older you are, and removal of a kidney automatically cuts it in half.  Eventually the remaining kidney starts to function more effectively.

Example-I had surgery at age 64 and my eGFR should have been at 60-70.  After surgery, it dropped to 32-34.  Over the past few years it has climbed and runs about 40-42 on average.

Fluids for hydration and to keep all body systems running, a balanced eating plan (I never say diet), exercise-even if just walking, and staying active and motivated, and keep your BP and weight in a healthy range.  Which is probably the same thing and Dr. will tell you.

I'm sure others may have good advice or comments.  But for now, I'll let you digest what I've said, and encourage you to click on the the user names on the posts.  If the members have filled out a user id, you can learn their stories and find others with either similar age, cancer type, or residemce area to ask more questions.  Otherwise you end up asking shotgun style questions when you want to hit the bullseye.

As others may say, "Welcome to the club, sorry you're joining."

Donna

kuzman60's picture
kuzman60
Posts: 31
Joined: Nov 2014

hello.my case is the same like yours-I had a 4 sm tumour and radical nephrectomy on the left kidney.6  month before surgery I had an ultrasonic scanner and it didn't show any evidence of tumour .I think my cancer have been provoked by very stresfull emotional experience I had after this scanner.

 
 
 
foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Welcome a_c,

1) as far as I've learned from this board urologists usually take it easier the oncologists, so it's a good advice to find a good and experienced medical oncologist because if anything bad happens the one who will treat you not your urologist. I love my uro-oncologist he is very caring and positive, very kind and expert in his job so I feel confidence to be under his care but in the meantime I follow what my oncologist says. I double check all my scans and blood works which makes me feel a little less stressed. am I crazy?

Here are two links about kidney cancer follow up issues.

https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

 

www.nccn.org

search for (NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®)Kidney CancerVersion 3.2015)

and about the care the remained kidney, water is the main key, you should drink atleast 8 glasses daily, more is better until the color of urine is straw. beef and lamb aren't good for kidney, chicken, fish,shrimp should be your choices,alcohol isn't good too. and salt is awful.

2) well, about how fast can rcc grow, it depends on the type of rcc and it's furman grade. it's between 1 to 4. furhman grade 1 means cells look like normal cell with little differences and they aren't growing fast but furhman grade 4 means they are far different from normal cells and so they are aggressive. there are other things which show how aggresive a tumor is, such as the tumor having sacromatoid feautres or being microscopy necrosis, but the value of furhman grade in CCRCC is proved.

a_c
Posts: 4
Joined: Mar 2015

I appreciate the advice!  I will look into getting an oncologist (hopefully my insurance will cover it), and definitely check out the suggested links.

I did get the pathologist's report back and it was stage I and grade 2, so not as good as grade 1 but I was told it still meant it was not particularly aggressive.  The cancer was completely surrounded by healthy tissue which I am told is very good.

I'm trying not to get too complacent; I am 2 and a half weeks out but feel fine.  No pain, a little discomfort, but I'm fairly active without experiencing any weakness.  I get tired a little more easily but not too much.  Fortunately (in a sense) I am fairly youngish (39) and prior to this was in excellent physical shape.

icemantoo's picture
icemantoo
Posts: 3218
Joined: Jan 2010

a-c,

 

In addition to follow up for scans to monitor any spread of RCC in the future, also consult with a nephrologist to monitor kidney function. As a result of your neph. you (and I) have abnormally low kidney function for which there is little we can do. But we can control other things which also lower our kidney function. These include weight, diet, blood pressure, diabetes etc. Low kidney function can cause Kidney failure down the road as well as being a risk factor for heart and stroke issues. There is also one other factor that negatively effect kidney function which we can do nothing about and that is getting older. So let getting older be the one bad thin you do for your kidney.

 

 

Icemantoo

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

Grade 1 & Grade 2 (and Grade 3) are similar.

 

With that said, you want a CT with contrast at 6 months.  For the lung and adbomen.  If you can not take contrast (because of kidney function), then an abdominal MRI and CT of the lung without contrast.

The CT of the lung will catch any growths earlier than a chest x-ray.

 

I was 5.5CM, initially pT1b, grade 4 w/sarcomitoid differentiation...at 6 months, a chest CT (not by my surgeon, who wanted to do an x-ray) found a 1.5 cm solitary met in my lung.  That pushed me to stage 4.  But, I am now convinced that Stage 4 with a solitary met should be stage 4g, meaning the good way to have stage 4.   They surgically removed the met, and no other treatment.  I have been NED for two years.

After that, I decided to be followed by an RCC medical oncologist n a neigboring city, and his lab redid the pathology.  Because of vacular invasion, they rated it as T3 grade IV...but the question is moot at this point; we know the ******* spread....

 

Good luck.

jason.2835
Posts: 337
Joined: Nov 2014

AC,

I'm in much the same boat as you... I had a young, surgery focused doctor who, while he certainly knows his stuff, isn't really interested in the future care.  At least I don't think so.  I actually have a follow up appt with him this Monday.  I want to see what his plans are.  But initially your story sounds very similar.  They took it out and celebrated and didn't really leave me with any more instructions.  So, Monday, I suppose I will find out what happens next.

I guess we can both keep each other posted.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

jason.2835, there is a great cancer center near you, Fox Chase.  There is a doctor there who was a co-author of the renal mass guidelines who may be worth connecting with.   His name is Dr. Robert Uzzo.  That was going to be the second place and doctor I was going to go to if Sloan Kettering did not work out.

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

Welcome to the club...

I am 38, and had my neph in September. Stage 3 grade 2 Took some time and lots of reading here to figure out what was happening to me. Your stage 1 grade 2 should not cause you problems anymore, but you need to have good follow-up, just in case something would go wrong in the future.

Since it is grade 2, it must have been on your CT 6 months ago, weird that they missed it. 

Even if you feel good right now, take enough time to rest and don't rush anything. You went through a lot and your body needs time to heal. i'm 6 month post surgery and still feel tired.

Best of luck in the future

Dave 

Jmat23's picture
Jmat23
Posts: 23
Joined: Mar 2014

Hi a.c,

In regards to solitary kidney health, dietary tips etc, you may find the kidney health association of your relevant home country handy. I have found some useful information on the below site (Australia), although you may need to subscribe to download fact sheets:

http://www.kidney.org.au/forpatients/healthfactsheets/tabid/609/default.aspx

In regards to question 2, when I was first diagnosed after experiencing blood in my urine, an ordinary CT was first performed without contrast in order to see what was causing the blood (at first they thougt it was a kidney stone). The first scan without contrast only showed a slight fleck of calcification in my right kidney and did not show my 7.5cm lesion (grade 3). Luckily for me they then did another CT with contrast which clearly showed the mass.

My urologist mentioned that low grade RCC is fairly slow growing (0.5cm-1cm) per year but everyone is different. Here's a link to some limited research: http:// www.cornellurology.com/clinical-conditions/kidney-cancer/renal-cell-carcinoma/. Even at grade 3 my urologist estimated my tumour may have been growing for several years.

Best wishes for a full recovery!

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