just had a nephrectomy, unsure about future care

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

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 said:

thanks!

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.

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

jason.2835 said:

Cowboy Surgeons

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.

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.

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!