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Benefits of being followed by a nephrologist vs. a urologist?

Talmidah's picture
Talmidah
Posts: 25
Joined: May 2015

Hello everyone.  This is my first day on the Forum and it has already helped me enormously.  I learned about my 3.4' ish cm mass about two weeks ago, urologist pronounced it 99% likely to be cancer last week.  I am now scheduled for surgery on June 25 (had to to get my life in order first).  My urologist says he'll follow me after the surgery but if I am down to 1 kidney when it's all said and done as he suggests might happen, would it be better to have a nephrologist (alone) or with the urologist?  I would welcome your thoughts.  Thanks.

icemantoo's picture
icemantoo
Posts: 3313
Joined: Jan 2010

Talmid,

 

It is best to be followed by both as each serves a distictly different purpose. A urologist surgeon is concerned about mets and the state of your other Kidney. The Nephrologist is concerned about your lower Kidney function as a result of the Neph. He also addresses other issues outside your Cancer which affect your Kidney such as high blood pressure, diabities weight etc. Depending on your age many of us older dudes are classified as Stage 3 CKC (Chronic Kidney Disease). Many things cause reduced Kidney function including but not limited to the loss of a kidney. One observation my Nephrologist shared was that those losing a Kidney to Cancer do better than others with the same low kidney function numbers from other causes.

 

Icemantoo

APny's picture
APny
Posts: 1997
Joined: Mar 2014

Talmidah, I think you should get a second opinion. Mine was also the same size as yours and I had a partial nephrectomy that save 85 percent of my kidney. Of course a lot depends on the location, and it's possible that yours will have to be a radical one, but I think it's important to get another point of view before allowing a whole kidney to be taken. Another poster here, Positive_Mental was also told he needed a full one yet ended up having a partial by the same surgeon that I had, who saved 95 percent of his kidney. If possible to preserve your kidney, definitely go with the partial. There's always the risk it will have to convert to a full nephrectomy but at least you start out with the hope of preserving most of your kidney.

Talmidah's picture
Talmidah
Posts: 25
Joined: May 2015

APny - I really appreciate your response.  I have actually seen 3 urologists so I have a second, second opinion.  The one who is doing the surgery is going in with the goal of doing a partial nephrectomy and preserving as much of the kidney as possible.  However, the tumor is in the middle of the kidney and is "sitting" on the artery.  But he can't tell if it grown into the artery - which I know would change the whole trajectory.  We have discussed the potential need to convert to an open procedure and a complete nephrectomy.  In the meantime, I am going to find a nephrologist - does anyone have any suggestions for a nephrologist in DC or the Maryland suburbs of DC? 

APny's picture
APny
Posts: 1997
Joined: Mar 2014

Yes, location makes all the difference as well as whether it has grown into the vein. Hopefully not, and they can do the partial, but if not, at least it'll be gone. I'm sure you'll find a good nephrologist. Wishing you the best!

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I'm seeing a doctor Hussain at University of Maryland Medical center in Baltimore who seems very good, competent, empathetic and expert. I know there are many specialists at NIH in Bethesda, and Johns Hopkins in Baltimore has a deservedly high reputation.

I reckon you couldnt have chosen a better time or place to get cancer. Well done!

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

I am also in the DC area, but on the other side of the river from you.  

 

As Icemantoo said, Urologist is the surgeon and plumber....Nephrologist is concerned about the kidney function, but no the cancer per se.

You might not need a nephologist; I would wait to see how your kidney function is after the surgery.  I started seeing my nephrologist when my creatinine went high, to 1.8.  He does very little, except makes sure when medical procedures such as cardiac cath need to be done that my kidneys are treated properly.  He is affiliated with Inova fairfax hospital, where my cardiologist practices. 

 

If the tumor goes into to vein, you might want to consult with a medical oncologist.  I am/was stage four, with a lung met.  For the oncoligist, I see Dr. Hans Hammers at John's Hopkins.  There is no one in DC at his level (except for NIH, but they will only see you in a trial).

Talmidah's picture
Talmidah
Posts: 25
Joined: May 2015

Thank you for names of Baltimore-DC area nephrologists and thoughts about the benefits of working with the various specialties.  My biggest challenge so far is that there are only a handful of nephrologists in my insurance network that are with 25 miles of where I live or work so I will have to cast my net a bit wider.  My creatinine is already elevated.  It's going to be an interesting 5 weeks.

Talmidah's picture
Talmidah
Posts: 25
Joined: May 2015

I was able to get an appointment this coming Friday to meet with the nephrologist.    Does anyone have suggestions for making the most out of the upcoming visit?  What are the key questions I should ask?  What information should I have when I walk out of the office?

The nephrologist asked me to bring all my scans and any lab work I could find. I went back and looked at lab work from 2009 and observed a very gradual increase in my creatinine along with a decline in my eGFR.  I don't know if the change was due to Harriet's influence or not but she will soon be out of the picture.

Thanks everyone.

Bonzy's picture
Bonzy
Posts: 17
Joined: Mar 2015

My mass was a 9.5 cm x 7.5 cm in  the center of my left kidney. It had extended into the rental vein with LVI present . Had a open radical nephrectomy . My counts were all off and is starting to come back normal 6 months later , except for my GFR . It's still only 58. My urologist said he would take care of everything and make my appointments for all my scans. I already had my three month scan in March and no other date  has been planned yet. Little worried about that. Have a nodule in lung they are also watching. My urologist said nephrologist is if my other kidney goes into failure .good luck with your appointment and surgery in june 

icemantoo's picture
icemantoo
Posts: 3313
Joined: Jan 2010

Talmud,

The Nephrologist is going to look at all of your kidney function numbers as well as other medical issues which negatinely effect yoy kidney such as high blood pressure, smoking, diet  diabites, weight and exercise. The negative effect of low kidney function first and most offten appears in heart and stroke risk rather than loss of kidney function. As you get older your kidney function goes down as well. Part of your GFR is age related. While a gfr of 60 may be good for someone in their 50's with one kidney, those of us like me approaching 72 will not reach that number. The other downer is that a gfr under 60 (31-59) which most of us one kidney guys have is classified as Stage 3 CKD (Chronic Kidney Disease). The name is worse tham the bite.

 

 

Icemantoo

myoung790
Posts: 75
Joined: Sep 2014

Hi.  Your situation sounds very similar to mine.  I had a 3.7 cm tumor removed last October.  It was inside the kidney pressing up on the renal hilum and "distorting the flow".  We went in hoping to save part of the kidney, but were unable to once inside.  I did not have an intrusion into the renal vein, but my surgeon felt that the risk was too great for urine leakage and infection.  He had mentioned the possibilty of seeing a nephrologist afterwards, but did not refer.  He said that since I am very young, 41, and healthy, he didn't think that a nephrologist could really do anything for me at this point.  He said that if I had some other medical complications, he would refer, but thought it would be a waste of time right now.

Good luck.  Oh and I am outside of Baltimore.

Talmidah's picture
Talmidah
Posts: 25
Joined: May 2015

We saw the nephrologist Friday and he noted that my kidney function has declined to the point where I am in the chronic kidney disease category.  The tumor adds to the complexity of my situation - he wants to see how the surgery goes before embarking on a full scale treatment plan.  In the meantime, he ordered blood work to check on some values that most internists don't usually look at and suggested a low protein diet.  Motrin is another new worst enemy.  Does anyone have any experience of going into the surgery with kidney function already impaired (and not due to the tumor)?  How did you manage the low protein life? Fortunately for me, I don't eat meat or gluten but I know things have to be very different from now on.  My anxiety is sky high.

icemantoo's picture
icemantoo
Posts: 3313
Joined: Jan 2010

Talmid,

 

Part of your low kidney function numbers may in fact be as a result of the tumor. For what its worth we are all classified as having Chronic Kidney Disease. It sounds like you are going to keep following up with the Nephrologist. Do the things he/she suggests. Now lets get that little buggar out so that you can be on the road to recovery.

 

Icemantoo

 

 

 

 

 

 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Sorry, I just popped in and didn't really read all the replies thoroughly, but skimmed them.

Are you having a partial or radical nephrectomy?

If your kidney function is abnormal after your surgery (creatinine above 1.4 I'd say), then I'd want to see a nephrologist periodically. You want to take good care of your kidneys and watch your blood pressure (which can damage kidneys).

The followup with the urologist is for making sure you catch any mets if it comes back. Personally, I would rather be followed by an oncologist with RCC experience. My second choice is urologic oncologist (a urologist with specialized training in kidney masses). I would not want to be followed by a urologist, unless I thought he was particularly interested and thorough. Most run-of-the-mill urologists really don't know metastatic kidney cancer that well. A medical oncologist with RCC experience is the best choice. They are the ones that will manage your care should your cancer return (heaven forbid).

Best wishes,

Todd

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