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txbarton
txbarton Member Posts: 89 Member

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!

 

 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Get a second opinion from a Urological Surgeon

    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
    Galrim Member Posts: 307

    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
    APny Member Posts: 1,995 Member
    Galrim said:

    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

    I respectfully disagree that

    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
    foxhd Member Posts: 3,181
    APny said:

    I respectfully disagree that

    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.

    Me, on the other hand..

    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
    icemantoo Member Posts: 3,359 Member
    foxhd said:

    Me, on the other hand..

    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.

    My answer was not absolute.

    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

  • jacket69
    jacket69 Member Posts: 6
    Robotic method

    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
    todd121 Member Posts: 1,448
    Another Opinion

    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
    sblairc Member Posts: 585
    Robotic: Surgeon with experience

    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
    GSRon Member Posts: 1,303
    sblairc said:

    Robotic: Surgeon with experience

    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. 

     

    The one bottom line is it all

    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
    todd121 Member Posts: 1,448
    GSRon said:

    The one bottom line is it all

    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

    Risk of Partials

    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
    APny Member Posts: 1,995 Member
    Yes, it's much more

    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
    foxhd Member Posts: 3,181
    APny said:

    Yes, it's much more

    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.

    saving a kidney

    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
    sblairc Member Posts: 585
    foxhd said:

    saving a kidney

    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!

    Wow! That creatinine number.

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

  • foxhd
    foxhd Member Posts: 3,181
    sblairc said:

    Wow! That creatinine number.

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

    drink lots

    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
    Skagway Jack Member Posts: 224
    Mine was 7cm

    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.

     

     

     

  • Galrim
    Galrim Member Posts: 307
    APny said:

    I respectfully disagree that

    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.

    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

  • todd121
    todd121 Member Posts: 1,448

    Mine was 7cm

    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.

     

     

     

    Creatinine

    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

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    I'm confused

    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
    a_oaklee Member Posts: 566 Member
    get copy of report

    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
    txbarton Member Posts: 89 Member
    a_oaklee said:

    get copy of report

    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.

    I am going to a major medical

    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.