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Partial or total nephroctomy?

Lotus12
Posts: 7
Joined: Nov 2012

Hi,
I was diagnosed about 2 weeks back with RCC and the size of the tumor on the right kidney is about 4.8cm. I have met two surgeons - one recommending the radical procedure and the other has given me the option of choosing between partial/radical nephroctomy. I have no other problems and both surgeons believe the prognosis is excellent. I have not gotten a convincing reason to go with partial nephroctomy with my limited research. In fact I am a bit concerned about chances of cancer recurrence and the longer recovery time with the partial nephroctomy procedure. Can anyone please point me to material that can educate me better in this regard? I am more inclined to go with radical nephroctomy and I am assuming that the other healthy kidney can reasonably takeover some additional burden after the surgery.

This is my first post on this thread, so please feel free to advice me as you see fit. Any guidance on how I can make a informed decision about my impending surgery is welcome. Appreciate your time.

Regards,
- Lotus

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Lotus, welcome - it's a pity to need to be here but if there's the reason for it, it's a good place to come to.

I know that you've asked for the evidence, which is the intelligent approach. I've lately written about it, with regard to a study covering the subject but I can't, offhand, remember where. (I'll try to unearth that paper but hope that someone else can save me the search meantime.)

Anyway, I can say that the received wisdom these days is that NSS (nephron sparing surgery, i.e. partial nephrectomy) is preferable whenever possible. There are cases (usually with much larger tumours than you have) where radical is a no-brainer but otherwise you want to preserve as much kidney tissue as possible.

The partial is more challenging, surgically, and so there is a case for open rather than laparoscopic surgery, to be on the safe side and thereby minimise any risk of recurrence. This does entail slightly longer recovery time but is in the patient's long term interests.

If you do have a radical nephrectomy, then, so long as your remaining kidney is functioning OK (which would be checked out before the op) all will be fine and your surviving kidney will rise to meet the challenge and will compensate to an adequate degree for the loss of its partner.

Overall, your prospects sound to be good and I wish you all the best with whichever path is chosen.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

I know how you feel, I was offered both but was strongly reccommended the partial. I actually questioned my surgeon (Dr. Wood at MD Anderson) three times. He came back with several case studies (sorry I didn't write them down)where it is better with partial. He said your body adjusts better and doesn't seem to have some long term problems with other organs. He also brought up a study of people that donate kidney's and the long term effects caused by that. My tumour was 2.3 x 2.2cm, I see yours is larger but I believe you are right on the line where they reccomend the partial. He also told me that a small percentage that go in for the partial end up turning into a radical, just according to what they find. I hope this helps a little, have you chosen which Dr. you are going to do the surgery?

God Bless, and enjoy your Thanksgiving

Richard

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

I ended up googling this info after my first visit with my oncologist. There was a kidney conference in April 2012 and a Dr Jose Kamar spoke on the subject along with Dr Cristopher Wood on trials and other options. You can google it.
I hope this helps, but ultimately it is your choice. I know I wrestled with this same issue for a week, and after researching it some more I called my Dr back to have him explain it to me again.

God Bless and prayers with you and your family,
Richard

Lotus12
Posts: 7
Joined: Nov 2012

Very much appreciate quick and comforting responses from Richard and texas_wedge. I will summarize the current situation below:
X The director of Urology at Scripps is recommending a radical Nephroctomy and removing surrounding lymph nodes as well. The tumor is exactly 5.5x5.5x4.8 cm in size on the upper third to half of the right kidney.
X The kidney cancer surgeon at UCSD is leaving us the choice of deciding between partial or total Nephroctomy and does not want to touch the surrounding lymph nodes. He says there is no evidence of cancer there and even with healthy margins of excision, I am covered by either of his recommended procedures. I will have to recomfirm with him again, but I think he said he can save about 80% of the healthy right kidney. This translates to me living with 1.4 kidneys versus 1 kidney if I went with the radical. Seems useful to have extra 40% kidney in the bank, but another twist is that there are two low attenuation lesions in the bottom of the right kidney. These add to my anxiety in terms of recurrence, but the UCSD surgeon says he will evaluate with the help of a pathologist at the time of surgery and ensure the right margins of excision.

Do you all think I need a third expert opinion? Or this just a matter of tossing a coin? Would have helped if the UCSD surgeon recommended a specific approach, but I could not pin him down on that count. Again, appreciate all assistance from this amazing network of friends in such pressing times...

-Lotus

newenglandguy
Posts: 66
Joined: Jun 2011

I had an option of partial or lathroscopic and chose partial. Reason - so he could see everything and get everything out at same time. With a lathroscopic approach, there may be some back and forth. Wasn't comfortable with that.

If it was me I'd try to go partial, to be able to have more than one kidney. Again, as others have said, they may have to move to a partial if certain parts of the kidney are involved. That's a decision the surgeon will have to make once he's inside there. The biggest thing is have trust in your surgeon. It's a big decision, but I wouldn't do it with a coin toss. List out the pluses amd minus of each and add up the numbers .

Good luck and may you have a quick recovery.

foxhd's picture
foxhd
Posts: 1871
Joined: Oct 2011

I also wouldn't want my mechanic to work on my car without opening the hood. It's major surgery. Let the Doctor in to do the job right.

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Lotus,
I had a partial nephrectomy on my right kidney in December, 2011. I met with 2 urologists/oncologists and they both recommended a partial. I liked the idea of having more than 1 kidney after surgery. They removed a 5 X 4.5 X 3.8 cm mass on the right kidney. He said he saved roughly 75% of the kidney. I've read a lot of articles...most very positive about partial nephrectomies, under the right circumstances and of course every case is different. I wish I had saved the links, but...

My concern became more over laproscopic or open. The surgeon I decided to go with wanted to do an open partial nephrectomy.

After reading more about it, like Fox said, I came to like the idea of the surgeon being able to "open the hood" and not be under time constraints during surgery. It took longer to recover, but I'm happy with the decision. I still have a little discomfort at the incision site, but it's not bad. I'm feeling great these days!

I wish you the best. I know the weeks before surgery can be tough. Hang in there!
--David

adman's picture
adman
Posts: 258
Joined: Jul 2012

...just one more thing to be asking.

For purposes of full disclosure - I'm NOT doctor, just a guy who's been in the shoes you're currently standing in.

What is the risk/ reward of keeping a part of the kidney. This is different for everyone. Point being.

1. What percentage of your kidney will be left and functioning? If it's 20 % is it worth the risk? Maybe in your case it's 50% or more. I don't know.

2. You also have to evaluate the post-surgical risks - which can include internal leakage. How long will you have to live with tubes coming out of your side? There is no way to know this for sure, but it can be so long in some cases where the Dr's need to go back in and remove the remaining part of the kidney. The Dr told me he had a patient that had to live with leakage issues for 9 months & was going to have to remove what was left.

I was also on the border as well w a 5.0cm tumor and also had this choice. It was tough. Very tough. I spent more than a few sleepless nights deciding. Pros & cons on both sides. I do agree, if you can save part of your kidney it is worth seriously considering.

I saw 3 docs for different opinions. One was firm - do a full. The 2nd said do a partial. The 3rd said he could go either way. A lot of this depends on where the tumor is located. Which can determine & raise your post-surgical leakage risks. The 3rd doc really outlined the risks of doing a partial but said it could be done, he just wasn't sure what my 'post-surgery' recovery would look like & told me to make sure I understood those risks.

I'm not a doctor. All I'm saying is, please educate yourself as much as possible so in the end you can make as much of an educated decision as humanly possible.

Wishing you the very best. God Bless!!

icemantoo's picture
icemantoo
Posts: 1473
Joined: Jan 2010

Ten years ago when I had mine they were not doing partials. Now at 69 my kidnry function is less than perfect (45 GFR). What would I have done if I had the choice? Read up and make an informed decision. There is no right or wrong answer. From my observation the partial is a more difficult surgery with occasional complications. On the other hand a reduced kidney function can make you more suseptable to other ailments. Sometimes you decide on a partial and the surgeon makes a game time decision for a radical anyway. Whatever decision you make will be the right one.

Icemantoo

angec's picture
angec
Posts: 621
Joined: Mar 2012

If it were me I would want to save the kidney if possible. If the Doctor does open surgery and can clearly test those other lesions to be sure they are not cancer ( ask him if he has a pathologist in the operating room or if he sends the tissue to pathology during surgery) and if he is sure he has clear margins, then why not try to save as much as possible. But if the other lesions are cancerous I would take the whole thing out. The tumor is not much smaller than my moms was and hers took up 80 percent of her kidney. I hope it goes well for you. Try to get the best surgeon with the most experience with kidney cancer. Did you have a full body pet/ct scan? Wishing you the best!

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

I was definately a different case, but I went into my oncology surgeon with the thought that the reccomendation would be a radical (get it all out of me). That's why I second guessed him twice and he had great answers for why he preferred the partial in my situation. Still not totally convinced (I researched more)and then called my team back a few days later. His nurse called me back and took down my questions and said someone would call me back. My Dr. (I was pleasently suprised) called back and went over each issue.
I was lucky and blessed in many ways. First I was referred to another urologist with a different hospital system, but before I could see them, I got into MD Anderson. The question is which Dr. and hospital do you feel comfortable with? Is there a better one in the area that you would prefer, and can get into? I was giving 5 options, 1. active survelance, (not reccomended) 2&3. cold or hot evation (nr), 4. open radical nephrectomy (nr, 5. open partial nephrectomy (Dr. reccomended with answers). I believe if it is an option, have the open so that if there is something that didn't show up and is unusual they can go ahead and remove.
What kind of tests have you undergone so far? Just in case you didn't know (I didn't) you can get a copy at the place you were imaged of the scans and the radiologist report by going there and asking....
I was told after the partial, that I was cancer free, the margins were clear, and that I should have 90 percent function on the kidney they operated on. I am glad I kept it.
Sorry for going on and on :-).

Lotus this is a major surgery, so I would definately use the best hospital, Dr. that is available to you. I would definately write all your questions down and go over them again with the Dr's.

Good luck and God Bless and welcome to the club......

Richard

Lotus12
Posts: 7
Joined: Nov 2012

I am overwhelmed with so many thoughtful responses and feel somewhat comforted. As difficult as the rough seas appear to me, I could not be in better company to navigate them than with such amazing friends on this virtual network. Indeed, this virtual network is gradually becoming more real than the physical network that I had been so used to until recently. I cannot be grateful enough to all of you for your thoughts, concerns and best wishes.

Here is a brief recap of the tests done so far. I have had a lot of blood work done to check for CBC (Complete Blood Count), PTT/APTT (Activated Partial Thromboplastin Time), liver panel, C-Reactive protein, Uric acid and ESR (Erythrocytes Sedimentation Rate). A chest scan was done couple days back while of course the contrast scan of the abdomen opened up the RCC world as you all aware.

While I have to decide on the partial versus total Nephroctomy shortly, are there any referrals to kidney cancer surgeons in the San Diego area? If so, I would be eager to connect quickly with any such patients with first-hand experience to help me further. Again, I am most indebted to all of you for your valuable assistance and time.. Hope you all had a great thanks giving and also stuffed up your home with all the great BlackFri deals...

-Lotus

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Lotus,
You won't get the first-hand experience information (that you probably want most) there, but kidneycancer.org has a contact line that will provide you with a list of kidney cancer surgeons in your area. I actually used this to find my surgeon. Then I worked on recommendations from there. It turns out the surgeon they recommended had excellent credentials and experience in RCC surgery.

I'm sure you'll have a lot more options in Southern California than I had in Mississippi. This service was very valuable to me. Here's the link:

http://www.kidneycancer.org/index.php/nurse-hotline-staff

Also, their downloadable pdf book "We Have Kidney Cancer" is great. The link is on the main page at kidneycancer.org.

Good luck, David

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Hi Lotus,
Check out the thread I started today on "What's new in Kidney Cancer?". It has links to a pdf featuring new info from the 2012 International Kidney Cancer Symposium such as pros/cons on partial vs radical and open vs lapro vs robotic. One of the surgeons featured is from southern California.
--David

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Ah yes, that's the paper I was referring to above that I couldn't lay hands on - glad you identified it for us David.

Lotus12
Posts: 7
Joined: Nov 2012

David,
Very informative paper... I was glued to it for the last couple hours. In particular, I was trying to get clarification on removal of lymph nodes and i was happy to read a presentation on the very subject. Appreciate your efforts in sharing the link, and more importantly goading me to read the same...:-). Thanks again.

-Lotus

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