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Avoiding kidney removal: who should I see?

starman
Posts: 15
Joined: Sep 2009

A recent catscan turned up a 4.9 cm tumor on my right kidney. I've seen two urologist surgeons who both want to remove the right kidney completely. I read an article on WebMD about a study done in 2008 that showed that most surgeons prescribe kidney removal because its easier than just removing the tumor. So how can I find a surgeon who will at least try to remove the tumor before taking out the whole kidney? Should I see a cancer specialist instead of a urologist? I realize that because of the placement of the tumor I may have no choice but to remove the whole organ, but man, if there is any way I can keep it and just loose the tumor, that sure would be nice. I just have no clue on how to find someone who can do this.

donna_lee's picture
donna_lee
Posts: 429
Joined: Feb 2009

I hope you realize that kidney cancer does not respond to radiation or any kind of drug in the way that breast, prostate or other types do. Even the drugs that are used on RCC patients don't "cure" it... They can interrupt the blood supply, cause the tumor to stop replicating, make your body build immunity, and shrink some of the tumors.
That said, surgery is your only real option at this time. So now you want a partial nephrectomy.
A consult I could refer you to is Dr. Mitchell Sokoloff, University of Arizona Medical Center in Tuscon, AZ. He performed a total on me when he was still at Oregon Health Sciences University; but also is a specialist in urologic surgical oncology. (Go online to check him out, get phone number, etc.)
With tests all being recorded electronically, you could have then sent to him for a consult and opinion.
donna_lee

starman
Posts: 15
Joined: Sep 2009

Thanks Donna, and yes, I realize that kidney cancer is generally not treatable but I've read some case studies on the internet of people who were able to have just the tumor removed, saving the kidney, so I am trying to find doctors near me (in Florida) who would at least consider that. The tumor surgery I mentioned was done robotically, and I met with one robotic surgeon but even he said that the whole kindey had to come out. What concerns me is that I've had several nurses and my general MD tell me that surgeons often want to "cut and remove" since that is what they do. That scares me... how do you find a surgeon that is more open minded to other options?

prairiepatty_06
Posts: 3
Joined: Aug 2009

Starman-I understand how you feel. I'm having a partial 10/14- My tumor is on the outer aspect of the kidney. The Drs say that I had to sign for a radical(just in case).From what I can tell-you've had 3 opinions- I was an RN way back when-but I wouldn't take my opinion on this nor a primary. Yes surgeons cut-that's their job, but they don't take more tissue than nessary to "cure" the problem. Originally I wanted my whole kidney removed cause I had breast cancer 11yrs ago.This tumor is 2-3cm and because of the placement they feel they can do a partial- It took a bit of convincing but it makes sense. Each case is indivudal and it seems that all your surgeons say the same thing. Perhaps a cancer center near you could have a surgeon you could see. I hope you find what your looking for, you need to be comfortable with your decision. Good Luck to you!

TrudiLou
Posts: 1
Joined: Aug 2009

I had renal cell carcinoma, 6cm on my right kidney, I had my kidney removed and I am now cancer free. Sounds like maybe the way the tumor is lodged in your kidney that there is no other options than ro remove it. I suppose you could get a third opinion but I wouldn't wait too long to decide. Remember by removing the kidney you will not have to worry about it spreading and will not need any treatment. I know how scared you must feel, we all have these feelings and if a 3rd opinion will make you feel better by all means go and get one. I wish you luck and a speedy recovery which ever way you go.

donna_lee's picture
donna_lee
Posts: 429
Joined: Feb 2009

The Dr. I mentioned in an earlier post-Mitchell Sokoloff-does do nephron sparing partial nephrectomies. It would be worth your time and effort to get a long distance opinion of what he thinks. Call his office and ask if you can have your digital images sent.
At Stage IV, and a tumor 12x13x8 cm, I went the whole 9 yards with a total.
Good Luck.
Donna-Lee

starman
Posts: 15
Joined: Sep 2009

Thanks everyone. I did get a third opinion and this doctor explained in much more detail why the whole kidney must go. From what he showed me on the scan, it looks like the tumor is almost in the center of the kidney. If it was located near the top or bottom they could do a partial (I think) but because of the location the whole organ must go. Oh well, at least now I understand why. For anyone else reading this I highly suggest you keep seeing doctors until you find one that takes the time to carefully explain your situation. My last doctor basically said "I know it sucks to take out your whole kidney without knowing if it's malignant or benign, but that's just the way it is right now." I really appreciated that frank honesty in "layman's" language.

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