New to this forum

2»

Comments

  • sblairc
    sblairc Member Posts: 585 Member
    #22
    txbarton said:

    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.

     

     

    Sound like you are in great hands.

    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
    txbarton Member Posts: 89 Member
    #23
    sblairc said:

    Sound like you are in great hands.

    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?

     

    I am seeing a kidney cancer

    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
    GSRon Member Posts: 1,303 Member
    #24
    txbarton said:

    I am seeing a kidney cancer

    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.  

    The surgery was soooo easy..

    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
    icemantoo Member Posts: 3,361 Member
    #25
    GSRon said:

    The surgery was soooo easy..

    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

    The neph

    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
    txbarton Member Posts: 89 Member
    #26
    icemantoo said:

    The neph

    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

    I am not concerned about a

    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."

     

  • Srashedb
    Srashedb Member Posts: 482 Member
    #27
    todd121 said:

    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

    Creatinine

    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

  • APny
    APny Member Posts: 1,995 Member
    #28
    txbarton said:

    I am not concerned about a

    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."

     

    As I said above, I had an

    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
    GSRon Member Posts: 1,303 Member
    #29
    txbarton said:

    I am not concerned about a

    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."

     

    Pain after varies a lot..

    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

     

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #30
    txbarton said:

    I am seeing a kidney cancer

    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.  

    I went to same doctor as

    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.

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #31
    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.

    Agree with APny, but I went

    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. 

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    #32
    txbarton said:

    I am not concerned about a

    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."

     

    Pain is individual thing

    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!

Discussion Boards