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txbarton's picture
txbarton
Posts: 89
Joined: Aug 2009

I was diagnosed with prostate cancer July 2009, had a robotic radical prostatectomy Oct 2009 and spent several years on that forum. 

I will ill try to make a long story short. I got a campylobacter infection in mid-August that ended up leaving me severely dehydrated and in acute renal failure. 4 days in ICU and I went home. While there the nephrologist wanted an ultrasound of my kidneys. They found a shadow on my left kidney. Did a CT scan without dye because of the condition of my kidneys and confirmed a 6cm mass. 

I went to to a reknowned urologist yesterday. He said my kidneys still wouldn't stand up to the dye so now we wait until early or mid October.  The doctors in the hospital said my tumor is "small" and would be easy to remove. The urologist said it is large and could be difficult. He recommends open surgery, likely because he doesn't do robot or scope.  My tumor is external and on the lower part of my kidney. 

I will ill seek a second opinion on the procedure. 

I have scanned this forum a little and came across several people whose tumors were near the size of mine and a couple larger that were removed via robot. 

Can anyone comment about open kidney surgery?

Side note: to add insult to injury my primary care physician did a routine blood test on me the week after I got out of the hospital and my PSA is back!  It's been undetectable for almost 5 years and now showed up at .15!

 

 

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

txbarton,

What concerns me about your Urologist is that he is only one dimensional. Obviously he is older and not trained recently as the Kidney Cancer specialists in the last 10 or 15 years are trained on these new techniques.. You want a surgeon familiar with laproscopic and robotic surgery so those options are on the table also. Ultimately you may or may not have an open procedure, but you want the decision based upon your tumor, its size and where it is located not what your surgeon is limited by. Although your urologist may be renowned he is not likely a Kidney Cancer specialist if he is limited to open surgery.

 

At 6cm your tumor is medium size. Certainly curable from surgery, but too large to watch and wait,

 

Good luck with your second opinion. At 6 cm get this done sooner than later.

 

Icemantoo

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

6 cm is neither small nor large. The term small may have been used at the hospital as it sizewise would fall into the T1 category, which by definition is the "smallest" category. However, as Iceman also states, in layman terms its medium sized (also medically I guess since its borderline T2).

As for your urologist dismissing partial neph on a 6 cm mass, get not only a second opinion, but get a new urolgist. Unless the location on the CT images gives a very good reason to conduct open surgery it shouldnt be necessary.

And you want to avoid open surgery for a number of reasons.

Good luck.

/G

APny's picture
APny
Posts: 1988
Joined: Mar 2014

I respectfully disagree that if a surgeon doesn’t do robotic or lap surgeries he’s not a kidney specialist. My surgeon at Sloan Kettering is highly regarded and is considered an expert in the field. He does not do robotic or lap surgeries, not because he’s unskilled or incapable, but for excellent reasons, which he fully explained to me during consultation. I was totally convinced that open was the only way to go. He is also an expert in partial nephrectomies, which many surgeons avoid due to its complicated nature. I’m not saying robotic and lap surgeries should be avoided, and for some cases they may be wonderful, but I don’t think a surgeon should be dismissed as not expert enough if he is not a fan of them. My open partial nephrectomy went very well and I was out of the hospital in 2 days. Get a second opinon for sure but don't dismiss surgeons who recommend open procedures.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I had absolutely no concern of how they removed my tumor. I didn't care if they had to remove my head and go in that way. This is because I know that we will heal from anything that they can do to us. First concern should be of saving your life. The surgeon will determine what is most effective procedure. A few more weeks of recovery makes zero difference in the long term scope of things. I'm always surprised about people worrying what procedure will be used. Getting rid of the tumor should be the only concern.

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

Although their are a few experts out there who believe in or only do open surgeries their are others who only do open surgeries as they were not trained otherwise.

There is more than one right answer.

 

Icemantoo

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

There are a multitude of scenarios where open surgery is preferred, or may be the only possible approach.

However, the during op and post-op possible complications, and the extreme difference in post-op recovery and long term side-effects considered, NOT offering lap/robot-assisted nephs at all is simply not on level with current standards in most healthcare regimes in the western hemisphere.

/G

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Agree with APny, but I went to same doctor at Sloan Kettering.  In my case, my tumor was perihilar anterior, and when they opened me up, it turned out it was on the vein/artery going into the kidney, and they had to remove the tumor from the vein/artery.  This would not have been possible with a laparascopic procedure.  Also, all of my doctors deemed my abdominal region a "hostile abdomen" (LOL) due to massive scarring from surgery to my intestines when I was a newborn.  I was not a candidate for a laparascopic procedure. 

jacket69
Posts: 6
Joined: Jul 2014

I had a kidney and 12 ct tumor removed in March using the Robotic method.  The incision was fairly small for the size of the tumor and I was in the hospital 2 days.  I can't help you with any other surgical removal method but I can tell you the Robotic method worked great for me.  I recovered for two weeks and went back to the office (Lawyer) and within 4 weeks I was working full time.  In May I was piloting my boat on the Chesapeake Bay and able to do most everything I could do before the surgery.  My cancer was Stage IV and I'm taking Sutent which is working quite well.  

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I wouldn't call it small. The cutoff is 7cm for Stage 1 versus Stage 2. Without contrast, it's pretty hard to say if it's really 6cm. Even with contrast, mine was said to be 6cm and when my pathology came back it was 6.9cm. Perhaps the hospital is saying small relative to other things?

As I read other posts about the debate of open versus laproscopic, I realized the point is correct that there are urologists that don't do the laproscopic because they're "old school" and never been trained in it or don't have that capability where they practice, and then there are others possibly that have reasons not to do it. My surgeon said that studies had shown that it was as good/safe as open, but with benefits (less trauma so faster recovery). I know for my surgery, I had the laproscopy but I had a huge incision because he needed to remove the kidney intact (the tumor was large and sat in the center of the kidney, making it impossible to remove the kidney in sections). So my surgery was sort of a compromise between the two.

More important than open versus lap, is partial versus radical. Partials are more difficult and not everybody does them. I had to have a radical because of the location of the tumor. If you can get a partial, you may be spared some kidney function.

Getting another opinion is a really good idea. Try to get one from a urologic oncologist that does do laproscopic and ask both surgeons for their reasons so you can follow what they are recommending and why. I suggest you take a list of your questions and take someone with you so you get two sets of ears hearing the explanation. You'll have a much better chance of remembering what was said if someone else is present. Also, the surgeon often has a "team" with him when he comes in the room and it helps for you to have your support team with you to even things out. My experience was that when I had 1-2 people with me, the surgeon took more time to explain everything and I found that I was less nervous (maybe even intimidated) with my people to support me/witness the discussion.

Best of luck to you.

Todd

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Not all surgeons are trained in robotic surgery, nor want to be. Not all facilities within medical groups have them either, from what I understand. I think if you are interested in robotic as an option, make sure your surgeon is well versed and has many many surgical procedures under his belt. I noticed you mentioned robotic surgery for your prostate, so it sounds like you might know this already. 

It is my understanding open surgery requires cutting through layers of muscles and tissues not necessary during a laproscopic. This ultimately makes the surgerical recovery longer overall. I know it is common to "go in with the robot/lapro" but switch to open if necessary. My husbands tumor was measuring 8 cm ish on the CT and was about 7.5 ultmately and they were successful with a Robotic Lap. 

Fox, you and my husband had almost the same initial experience with the suddenness of the cancer (ER, then surgery). Honestly, they could have told us they were taking out the kidney with a Swiss army knife and a letter opener and we would have been "Sure, ok, great when is the surgery?" I think it's probably quite a different experience when there is plenty of time to think about it and prepare. 

 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

The one bottom line is it all depends on the location of the tumor, which is equally as important as size.  A small tumor in the wrong spot and you get a radical.  A medium size tumor in the best spot opens the door for a partial.

I agree with Foxster.. don't matter how it is done, as long as it is done properly.  Partials can be tricky at times, and there is a very slightly greater risk of needing an additional procedure. Very slight..

Good Luck..!

Ron

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I don't want to scare people away from partials. I don't know the statistics on how many have problems. If it had been an option for me, I would have tried it. Sparing kidney function is very important.

I do have a friend with RCC that had a partial that suffered a complication that is one of the major risks, and that is of the kidney leaking urine into the abdomen. If I didn't know him personally, I wouldn't repeat the story. He had leaking into his abdomen for months and the surgeon that did the original surgery kept "hoping" it would resolve on its own. He had a drain in for several months. Finally, the surgeon decided he was going to have to open him back up for a radical. My friend got another opinion.  The new surgeon ended up not doing the radical. I forget the name of the procedure, but basically they put a stopper in the vein/artery that leads into his kidney which killed the kidney. It was a less invasive procedure than a radical. He's doing fine now and it's been a year or two.

Todd

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Yes, it's much more complicated than a full so your surgeon has to be extremely experienced with partial nephrectomies. But if at all possible, try to go for one. Mine had no complication but I did have a drain in for a week. I was only in the hospital for 2 days (and mine was an open procedure) but came home with the drain. No biggie and I had no problems afterward. If you have to have an open procedure it's not horrible. I was out of bed and walking the same night as the surgery. Off morphene drip the next day and I can't say recovery was awful at all. No picnick but not horrible either. Go with whatever works for your particular case. As said, I didn't care what they did as long as they removed the little %$#@, lol.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Sounds like a really good idea. If possible. But, my mother had 2 kidneys and ended up on dialysis and died. My sister only had one kidney. She had dialysis and died. My kidney was removed and my creatinine is .9. It's as good as a healthy 20 yo with 2 kidneys. I'm glad my kidney is gone. I wouldn't want to offer a good hiding place for some mutant cells. The secret is beer and pizza I tell ya!

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

That's impressive. How do the doctors account for such a great number? (and don't say pizza and beer, LOL)

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

My golf buddy ended up in the hospital this summer. He was going into renal failure. He has always made fun of me because I pee alot. And he never did. I tried to explain to him that my tank is always near full. so when I put any more fluid in, something has to come out. He admitted to never drinking much and said he had never gotten up at night to pee. Ever. Now he is complaining to me that he gets up at least twice a night. His numbers are still worse than mine, but he drinks water all day long now.He is scared to death of having kidney disease. So lots of fluids is the key. Pizza is optional.

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

I had a full right nephrectomy.  The tumor was 7x5cm.   My surgeon was of the opinion that my otherwise healthy condition would make survival with one kidney easier than taking the chance on a partial removal. He never suggested a partial. Part of the complication for me was that there was uncertain involvement with my liver.  As it turned out there was no penetration into the liver. From what I have witnessed on the forum my open procedure did not take significantly longer to recover from than many of the partial robotics I have read about.....though it did leave beauty of a scar.

Go with the best advice of your doctors.  You will recover either way you go. I was out from work for a month but could probably have gone back after three weeks had i not had an abundance of sick leave.  Good luck TXbarton!

 

 

-Fox,  good one on ya .9 creatine.  I was happy with 1.48 recently.  I found an old blood work from 1991 recently and it showed my dual kidney creatine at 1.3 back in my healthiest days.

 

 

 

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I looked through my old blood tests in the year or two before my cancer was discovered and noticed that my creatinine had actually crept up (even though it was still "normal"). I wondered if anybody had noticed if that might have been an indicator that I had a large tumor growing in my kidney.

I'm happy if I get 1.6. Last year I had tests every 6 weeks for an entire year, and it varied from 1.6-1.8. Unfortunately, I have a lot of asymmetry in my body and the kidney with the tumor was quite a bit larger than the good kidney. In fact, they were worried I might not be ok with just the one, smaller kidney so they did a study before the nephrectomy to see how much work the right versus the left was doing.

One of my RCC buddies here has a creatinine of 1.1 with only 1 kidney. 0.9 is awesome.

I never thought I'd be envious of other guy's smaller (creatinine) measurements. Lol.

Todd

Srashedb
Posts: 482
Joined: Dec 2013

my husband's ex-GP had done 2 blood tests before the dx and creative numbers were slightly above normal as were blood counts which showed slight anemia.

"we need to keep on eye on that" to the anemia and "don't know what creatinine is". 

By then the cancer was already in his spine but it was only when my husband demanded an MRI to determine what the hip pain was that the kidney mass showed up. This quack wasted a year which may or may not have made a differencE. As my 98 year old mother-in-law said, "I know what creatinine means"; after the dx and an angry call from me, he called to say he was sorry. My response was not kind.

some doctors are totally incompetent but it is what it is.

Sarah

a_oaklee
Posts: 526
Joined: Nov 2013

Ok Peeps....explain to me why we are assuming a nephrectomy or partial nephrectomy for a tumor that is outside the kidney?  I thought those kinds of tumors could be removed through an open  or lap, and the amount of the kidney removed is based on whether or not the tumor cells infiltrated the wall of the kidney. 

Another question:  Has anyone ever had a lymph node removed by laparoscopy?  Can they do that?

 

To TX Barton:  I'm really sorry to hear that you are back having to worry about cancer.  If I was in your shoes, I would get myself to a major medical center that specializes in kidney cancer.  I would go to a place that sees lots of patients.  I guess you would call it a second opinion.  I would do it as soon as it can be arranged.  Also, I don't know if you aleady see an oncologist due to the prostate cancer, but if this is your second cancer site, I think you should consult with an oncologist prior to your surgery.  They may want to do a CT/PET scan to just see if there is anything else, anywhere else prior to your surgery.  Sorry if that freaks you out, but I would want all the information I could gather prior to the surgery. 

Another question for the group:  If RCC can be in other sites, like lung, bone, skin,....can prostate cancer be outside the kidney?  And does this change which specialist a person sees?

I'm sorry TX if I have presented more questions than you started with.  I'm trying to learn as much as I can too.  Keep us posted here on what the experts say.  When you find your team of docs, put your trust in them.  Best wishes,

Annie

a_oaklee
Posts: 526
Joined: Nov 2013

TX:  You should get a copy of the report that showed the tumor on your kidney.  The one from the hospital admission.  Read it for yourself to see where the tumor is and how big it is.  If you have to get the report from the institution, you might as well get a copy of the disc too.  You need this stuff for a second opinion.

txbarton's picture
txbarton
Posts: 89
Joined: Aug 2009

I am going to a major medical center in Dallas. When I was discharged from the local hospital I got a disk with the images of my ultrasound and CT scan and provided it to my urologist (he also got them directly from the hospital).  I looked at them at home but all I could comprehend was a small part of the narrative report. 

My youngest son, a Mayo trained hipato-biliary surgeon who does open, robotic and laparoscopic surgery, was with me when the CT scan was done and read them with the radiologist and hospitalist. He also sent a copy to a urologist friend who is proponent of robot and laparoscopy who feels an open partial is the best route.  My pediatrician daughter-in-law talked to my grandson's pediatric urologist about my urologist; she said if her dad had my issues he is the only person she would want.

My urologist called my son yesterday and discussed my case.  He measured the scan of my tumor at 8cm. After a long discussion combined with other input my son is comfortable that I am with the right surgeon. 

He will do a full torso MRI with contrast in early October and we will plan the next steps.

 

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Looks like you have some pretty awesome kids!! It is always recommended to see a kidney cancer specialist, so perhaps you can get some additional recommendations for a kidney cancer specialist to add to your team. 

 

That being said, what type of help/input would you like from us about open surgery? Maybe posting some specific questions will help you get the input from the group you are looking for?

 

txbarton's picture
txbarton
Posts: 89
Joined: Aug 2009

I am seeing a kidney cancer specialist and have 2 others in consultatiion. The urologists I refer to are kidney cancer specialists.

Right now now I am more worried about the surgery than I am the cancer. I have heard the open surgery incision is anywhere from your spine around to the side of your belly as well as only 6" long. I won't have an oppprtumity to ask my surgeon for another couple weeks.  

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

The surgery was soooo easy.. nothing to it... heck I slept all through it..!  The fear is much worse than the reality..  Incision size and location seems to be different for many of us.  I guarantee mine is a lot bigger than yours will be.  But most of the scar is gone..!  Darn it, I keep hearing that women love scars and mine is very hard to see what is left of it.

OK, so a few hints.. take the drugs..!  The initial pain is awful.. but the drugs sure do make it all just fine..!  Walk as soon as you can..  well you know all this I am sure...

Hang in there..!

Ron

icemantoo's picture
icemantoo
Posts: 3286
Joined: Jan 2010

Nepharectomies have been around for years. They are safe although occasionally some have complications, most of which are minor. They are major surgery. They are not fun and there is no way to sugar coat it, It is something we all have gone thru in this group. Mine was 12 years ago at age 59. As a result of partzheimers I do not remember any pain from the surgery or recovery. It was a mere bump in the road to the rest of my life.

I would much rather have a Neph than a baby like Arnold S did in the movie Junior.

 

Icemantoo

 

P.S. Only those who have had a Neph can joke about it

txbarton's picture
txbarton
Posts: 89
Joined: Aug 2009

I am not concerned about a scar ruining my beach appearacne, that went away years ago. :-). To me size of incision = post-op pain and recovery. 

As for the surgery, I am adopting my sister's attitude: "They will knock me out and I won't have any idea what they're doing so they can do what they want.  They have lots of painkillers to take care of me when I wake up."

 

APny's picture
APny
Posts: 1988
Joined: Mar 2014

As I said above, I had an open partial nephrectomy. The incision is about 5 inches long on the side (under my ribs) and the pain was very manageable. I was walking the same evening and every day after that, for 5 minutes every hour. I was home in two days, slept in my bed, could shower without assistance, and generally got around fine. Getting in and out of bed was a little tricky at first so you learn to "roll" lol. The fear of pain prior to surgery was a lot worse than the actual pain turned out to be. I would consider my recovery surprisingly unpainful. Drink a lot of water, walk as much as possible, and use a pillow pressed against you when walking or coughing. Makes it a lot more comfortable. And have one for the ride home as well. You don't want the seatbelt cutting into you.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Pain after varies a lot.. some people take nothing once they leave the hospital, some have pain for weeks.  My pain was very bad for about a week plus. (bigger surgery than what you will have, I was in the ICU for 10 days).  Some folks only need Tylenol post surgery..

Recovery.. that will take at least 4 to 6 weeks.  The important thing to know, is no matter how good you feel, your insides is still healing.  No lifting until fully healed or you risk a hernia at the surgery site, or worse on a partial.  It may be hard to not do much, but.. better safe than sorry I say..

I was walking on day two, some walk the same day..!

Ron

 

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

My radical right nephrectomy was open and my incision was 9 inches from just below sternum to my rigth side.  A beauty of a scar...which is starting to fade some (one year old next month). I was walking within about 5 hours after surgery....round the ward one lap.  I spent 3 nights and 4 days in the hospital.  I slept in a recliner for about 2 weeks since it was easier to get in and out.   I hit the pool and started swimming regularly at 1 month.  I walked every day up to that point.  The pain was manageable I quit using any meds after two weeks and havent had anything but occasional allergy meds since.  There is a fair amount of variance in pain levels amongst folks here.  I guess I was fortunate....it didnt hurt when it was discovered and removal wasnt as bad as I figured. I consider myself darned lucky.  I wish you the same luck!

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

I went to same doctor as APny, and I had an open partial.  I was walking the night of the surgery.  Out of the hospital 2 days later, and 4 days later I was walking 3 miles per day, and then up to 6 miles per day.  Everyone is different, though.  I'm 47, and I was otherwise healthy going in.  Some have minor complications like having a drain in place for a week or so after surgery.  The worst thing I remember is the pain that would occur when I would cough or sneeze, but after 3 weeks that went away.  In hindsight (only 2 months ago), it was not bad at all.

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