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Confused about surgeons ...

punster
Posts: 12
Joined: Apr 2018

Little backstory - I'm a 41 year old who found a kidney tumor as part of a heart valve repair that occured on 3rd of May this year. The tumor was detected on a CT scan as part of the preop testing. Most surgeons we spoke to recommended waiting for 3 months before the next surgery, so that timeline is coming next month. 

My tumor is located at the anterior pole and according to all the surgeons, it's at a tricky location sitting on top of the vena cava, but is localized to the kidney only. 

Being in the NY/NJ area, we've been to three of the best hospitals out there and the differences in opinions is making the decision tougher as to what to do next.

Surgeon 1 at Mt. Sinai has done thousands of robotic nephrectomies. He says that due to the location, he gives us a 66% chance of saving the kidney and he'll make the decision when he gets in there, whether to do a partial or a full neph.

Surgeon 2 at Memorial Sloane Kettering says that the location make it tough to get out and he'll only do an open radical neph. He also says that his boss, Paul Russo, agrees with that approach.

Surgeon 3 (head of urology) at Hackensack / John Thurer cancer center also does robotic surgeries and says that he gives us a 90% chance of saving the kidney, despite the tricky location. 

I know MSK is the best cancer hospital amongst the three, and we would've had no hestitation if their prognosis was to save the kidney. Given my relatively young age, the other doctors want to preserve the kidney as much as possible. 

I know every case is different, but who would you recommend going to?

 

 

APny's picture
APny
Posts: 1886
Joined: Mar 2014

I had Dr. Russo at MSK and to me he is a rockstar, but if a surgeon gave me 90 percent chance of saving the kidney I'd go with him.

angec's picture
angec
Posts: 923
Joined: Mar 2012

MSK is a good hospital but it doesn't mean the surgeons all have the same experience. The vibes I get is to go with the 90% possible partial. How many surgeries has he done? Can anyone else here recommend him? Also, go to smartpatients.com join that sight as they have much information on drs. And much medical knowledge.  Wish you all the best. I certainly would avoid anyone not willing to give you a chance to save the kidney. Prayers and hugs! Keep copies of all of your reports. I know that sometimes these tests aren't as accurate and maybe when they get inside there is room to work with. How big is the tumor? Was it biopsied? No definite diagnosis until they remove it. Can be anything. 

punster
Posts: 12
Joined: Apr 2018

The surgeon at Hackensack has done over 1500 surgeries, so he's definitely got the experience beneath his belt. 

The tumor is 4.7-4.8 cms and no, it wasn't biopsied, because the chances of false negatives (biopsy says it's benign, but it isn't) in case of kidney tumors is just too high. 

icemantoo's picture
icemantoo
Posts: 3164
Joined: Jan 2010

Punster,

 

In my day almost 16 years ago they only did full nephs. and I have been running on the spare only since that time. One observation from reading these posts for many years is that sometimes there is a recurramce after a partial in what was left of the Kidney. There is no one right or wrong answer. It sounds like you are dealing with 3 top surgeons. Go with the one you are most comfortable with.

 

 

icemantoo

JoanneNH
Posts: 115
Joined: Sep 2013

I know you have been here for years and I think I remember your being a stage 1.  I was wondering if you would consider adding that to your health history.   A 16 year survivor is fabulous and I am sure I am not the only one who wonders about what your stage was and if you had any treatment during those 16 years.

 

Just throwing it out for your consideration.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

Dr. Saurabh Agarwal was my surgeon, and he is outstanding. I lucked onto him and couldn't be happier with his work, follow-through, and bedside manner. He's very highly rated and has done hundreds of robotic nephs. I also can't say enough good things about my stay at Valley Hospital  Everyone was amazing. You don't have to go into the city for the best treatment. 

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 203
Joined: Oct 2017

I would also be confused.  I know that more than one consult is sometime good but 3 different options can really be confusing.  I had a radical left and although I didn't really think of the ramifications of living with one kidney I wanted the whole thing out.  My Dr. made the decision based on the mass location -Can't help you with your decision but I can wish you good luck-June

punster
Posts: 12
Joined: Apr 2018

Hi Gtngbtr - I've been reading your post recently, because my MRI report indicates that my mass extends into the renal sinus. I'm concerned about sinus fat invasion and the potential for upstaging the tumor. That addds to the compllication of choosing partial vs. radical, because the risks with partials on upstaged tumors is much higher for recurrence. 

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

Never gave a thought to partial.  Big lump in the centre of left kidney, no biopsy, I trusted my urologist (ie surgeon) and had a radical.  Life with one kidney is no different to life with two - thank your maritime predecessors.

Mine came back anyway and so far immunotherapy has got that under control.  No-one is right when faced with decisions like this, but I think a radical is safer long-term and not all that scary.

Best Wishes,

Fred

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 203
Joined: Oct 2017

You now Punster.  My mass was found in the midpole of my left kidney thought to be 3.7 cm. My Dr.'s Intern (or whatever his title was)origionally said it was a stage 1 however once I brought to his attention that it had a renal sinus component he said it's a stage 3 but said it gets treated like a stage 1.  The doctors didn't seem to make much of the renal sinus involvment.    When I heard the cancer diagnosis all I could think of was I wanted the whole kidney OUT , however my Dr. felt that once he was in he would determine which procedure would result in a better outcome for me. I never thought of the ramifications of living with one kidney -I know people who donated kidneys and they are fine with one kidney. A radical nephrectomy was performed due to the location of the mass.  What do you mean by upstaging?  How large is your mass?  Once the tumor has a renal sinus component its a stage 3.  I hope things are a little more clear for you and you are able to make your decision with a little more ease.  Best of luck-June 

 

punster
Posts: 12
Joined: Apr 2018

The renal sinus involvement is the unclear part to me ... My mass is 4.8cm, but the surgeon looking at the CT/MRI imaging thinks it's encompassed. There are two parts to the renal sinus involvement - entering the sinus and invading the fat in the renal sinus. THe renal fat invasion makes it a stage 3, but that can only be determined post surgery. Upstaging simply means that the surgeon thought it was a lower stage, but after removal and the pathology it turned out to be a higher stage. 

We're still thinking of going ahead with the partial neph as of now. 

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

That's exactly what happened to me. I'm glad they did a radical for me. They looked at the partial and couldn't figure out how to do it reliably so they recommended the radical. They thought it was Stage 1 going in, but after the pathology came back there was involvement with some of the veins and that made it Stage 3. They left me my adrenal gland and I had a recurrence in that adrenal gland 2 years after that. I'd just as soon they'd taken that adrenal gland when they took the kidney. Having a second surgery was no fun.

I've heard of a risk of not getting everything with a partial. I've seen posts a few times with partials and no margins. I wouldn't want to risk any cancer left behind and if you turn out to be Stage 3 anyways, I personally would want as much of the surrounding area gone as possible. My experience wasn't good with them leaving me things and I found them using imaging to predict the stage of the tumor to be very unreliable. I'm not sure how much better their eyes are when they are in there cutting around with their little camera and robot arms.

But I do get wanting to preserve kidney function. My other kidney was smaller so after the nephrectomy I ended up with slightly reduced kidney function. So far so good though. My creatinine measurements are in the 1.4-1.7 range ever since my kidney was removed.

Best of luck to you. (I can tell you that I do not trust overly optimistic surgeons at all. If I have a few data points and one guy is very optimistic compared to the others, I'd toss him. Maybe he's just really good, but maybe he's just got a really big head. I've talked to/seen more of the latter than the former in my experience with surgeons.)

Todd

punster
Posts: 12
Joined: Apr 2018

We've decided to go with the one who's giving the best chance of saving the kidney. He's done more than 1500 surgeries, so I'm hoping his experience will come to the forefront. He's warned us that it's a complex partial, so it could turn into a radical based off what he sees once he goes in there, and that's good enough for us. 

We're going to take our chances and leave the rest to God and hope that there's no upstaging .... :)

APny's picture
APny
Posts: 1886
Joined: Mar 2014

I think that's a good decision. If it has to convert to a radical at least you (and your surgeon) gave it your best shot to save the kidney. I'd have opted for that too. All the best to you!

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 452
Joined: Jul 2014

Hi punster. I believe my tumor is in the same general area as yours.  My tumor was classified as "perihilar," which means surrounding the hilum.  A link to the image showing the hilum is here:

  https://upload.wikimedia.org/wikipedia/commons/thumb/d/d6/Blausen_0592_KidneyAnatomy_01.png/1200px-Blausen_0592_KidneyAnatomy_01.png

Anyway, I had my surgery done by MSKCC by Paul Russo.  Like you, I was in my 40's when I had my surgery in 2014.  I was adamant that I wanted the greatest shot to preserve my kidney.  Dr. Russo preserved 95% of my affected kidney.

I had a bunch of reasons for not wanting or being a candidate for robotic surgery.  My abdominal region is like a war zone after multiple abdominal surgeries.  I am surprised one robotic doctor gives a 90% shot at saving the kidney.  Dr. Russo's open approach made the most sense for me.  I have no regrets and would do it again in a heartbeat.

punster
Posts: 12
Joined: Apr 2018

For my case, the MSK doctors are not giving us a chance at a partial and I too want the greatest shot at preserving the kidney. So we're leaning heavily towards the partial robotic docs, even though MSK has the best reputation. 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 452
Joined: Jul 2014

I did not catch that part in your original post about the radical nephrectomy reommendation by MSKCC.  I would want to preserve my kidney.  Truly a tough decision, as Todd raises some really good points too. 

susan99
Posts: 5
Joined: Jun 2018

we were in similiar situation last year. My husband's tumor was in the center -- sorry i don't remember the terminology but they did say it's a tricky location. doctor at one hospital let us decide -- partial or full. doctor at the another hospital recommended partial robotic. We went ahead with partial robotic and the doctor said he preserved 75% of my husband's kidney function -- but my husband had internal bleeding after the surgery and had to go through another procedure to fix it. it was one tough week for us. Perhaps that's something you want to bring up to your doctors.  

The reason why we decided to have a partial is my husband's age -- he was 46 and we want to preserve his kidney function as much as possible.   

 

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 203
Joined: Oct 2017

I'm with you-can't figure out the "renal sinus component".  There was no mention anywhere about fat invasion .  The MRI report prior to surgery said that there were a few foci of fat.  I'm not goin g to drive myself crazy about it since my Dr. didn't seem too concerned with it-maybe because my mass was smallish and a low grade B"H.  I think you've made a decision-if you're comfortable with it then its the right one!.  Good Luck-June

 

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

For me, the one who will take the best care possible is it. I was warned before hand that my partial could turn in to a radical. That does not mean the doctor was not capable of doing a partial. Sometimes they are not 100% on what they are dealing with until they get in there. In my case, the tumor was actually deeper than the images projected so I lost the whole kidney. I wish you all the best. We all would have loved to save our kidneys, but the cancer is gone and that's what is most important. Take care!!!!! By the way, my tumor was found when I was 38 and I lost the kidney just after turning 39! You will do great!!

JerzyGrrl's picture
JerzyGrrl
Posts: 757
Joined: Jun 2016

Hi, Punster,

You've got what sounds like three good choices there.

In truth, no matter what your surgeon says going in, a lot depends upon what turns up and/or happens when they're in there. There are sorts of "well, what do you know" stories that those of us on the forum share, as well as the rest of us whose surgeons had no surprises. So, their statistics are good, but not everybody ends up in the middle part of the bell curve.

Also, sometimes the surgeon's level of stubborness persistance affects some of the details [Had a family member have surgery -- non-RCC-related -- and the head of the department said to the other surgeons he supervised who wanted to do a more radical procedure that he was sure he could do it less radically... He also gave himself a time limit, agreeing as how after a certain amount of time, he'd go with the more radical procedure... He lucked out and made it under the wire].

Also knowing a place is the "best"...? The Ford F-150 or the Ram 1500 are top-rated pickup trucks, but a Chevy Silerado is a top-rated truck, too. Or, if your commute suits it, maybe you'd do better with a monthly pass with NJ Transit. None of them are bad or mediocre choices (OK... Sometimes NJ Transit is not the best, but you don't have to mess with tolls or parking in NYC). Personally (and, while I'm not currently residing in NJ I do know what it's like to drive around the Tri-State area), I'd go with the folks where the commute home after I'd just had major abdominal surgery isn't going to be more of an ordeal than it already will be (and, of course, where I felt I had good rapport with the care team, like the place, etc).

All the best, and keep us posted --

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