Newly diagnosed, questions about surgery

DanielQ
DanielQ Member Posts: 32 Member
edited September 2019 in Kidney Cancer #1

Hello to everyone,

I was newly diagnosed with RCC, at a relatively young age (20s). Being a "never-sick" guy, I was initally very shocked and depressed, but now I have come out from the shadow and will fight it with a positive attitude. I am glad to find such a supporting forum at CSN for kidney cancer, and hopefully I will be around at this forum for a long long time from now :) 

Briefly about my case, my tumor is 1 x 1.2cm, incidentally found from an ultrasound at a comprehensive physical. No symptoms (yet). CT highly suggests RCC. I immediately saw Dr. Russo at MSK and will do my surgery next week. 

I've never done any surgery in my life, not even dental fillings, so honestly I am rather nervous about my first surgery, especially an open surgery. Dr. Russo is certainly one of the best and I trust his skills with no doubt -- and I know he is famous here too. But Dr. Russo only does open surgery. Does this mean more pain and more life-time side effects compared to laparoscopic/robotic one? 

I am not too worried about any short-term difference, as resting for 2 weeks vs. for 4 weeks make little difference to me. But given a much bigger and deeper incision, I am more concerned about long-term or life-time side effects from an open surgery, such as muscle pain/sore forever, or losing the option to do other abdominal surgeries. 

Can anyone here with open surgery help me with my concerns? Will open surgery be an overkill for a small tumor at an easy location?

Thank you!

Daniel

«13

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited September 2019 #2
    Daniel

    Mine  was Lapo 17 years ago when rhat was the new thing. Now they have Robotic. Dr. Russo perfected his skills before there were the others. Open is actually preferred by some Dr's as they can get a better view of other stuff. I am sure oihers will reply includung some of Dr. Russo's patients. There is no one right  or wrong answer.

     

    icemantoo

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #3
    Sorry that you got this

    Sorry that you got this diagnosis.  I am a huge believer in second opinions.  However, you have a well known dr and hospital, so you should be in good hands.  Can you explain why you have to have sn open surgery.  Im very surprised at that.  What has Dr. Russo explained to you re this choice?  If you dont mind sharing info.  

    My husband (65 strong and healthy), had an open surgery and the entire kidney was removed.  It was necessary as his tumor was growing into the vena cava.  An open surgery takes longer to recover.   It was about 6 weeks before he went back to work, and then it was half days for awhile.  His situation was much different than yours, so probably shouldnt do any comparisons.

    Is your surgeon only removing the tumor, and sparing as much of the kidney as possible?   I hope so.

  • DanielQ
    DanielQ Member Posts: 32 Member
    edited September 2019 #4
    a_oaklee said:

    Sorry that you got this

    Sorry that you got this diagnosis.  I am a huge believer in second opinions.  However, you have a well known dr and hospital, so you should be in good hands.  Can you explain why you have to have sn open surgery.  Im very surprised at that.  What has Dr. Russo explained to you re this choice?  If you dont mind sharing info.  

    My husband (65 strong and healthy), had an open surgery and the entire kidney was removed.  It was necessary as his tumor was growing into the vena cava.  An open surgery takes longer to recover.   It was about 6 weeks before he went back to work, and then it was half days for awhile.  His situation was much different than yours, so probably shouldnt do any comparisons.

    Is your surgeon only removing the tumor, and sparing as much of the kidney as possible?   I hope so.

    Thank you

    Thank you a_oaklee. Dr. Russo only does open surgery for all his patients. He can see things and control situations better at an open surgery. He also mentioned that robotic surgery has higher risk of spreading the cancer cell so in long term he thinks open surgery is still the first choice. 

    And yes, that will be a partial nephrectomy to save my infected kidney. Hopefully my kidney function can be kept too. 

  • DanielQ
    DanielQ Member Posts: 32 Member
    #5
    icemantoo said:

    Daniel

    Mine  was Lapo 17 years ago when rhat was the new thing. Now they have Robotic. Dr. Russo perfected his skills before there were the others. Open is actually preferred by some Dr's as they can get a better view of other stuff. I am sure oihers will reply includung some of Dr. Russo's patients. There is no one right  or wrong answer.

     

    icemantoo

    Thanks icemantoo. I know

    Thanks icemantoo. I know there are several patients of Dr. Russo's on this forum. Probably they will share me with some of their experience too. 

  • eug91
    eug91 Member Posts: 471 Member
    #6
    welcome DanielQ-

    I don't have any advice for you (my neph was robotic), but I wanted to welcome you to the boards. Sorry you had to join us, but these forums are terrific. We know what you're going through and we're here for you if you have any questions or concerns or if you just want to rant. 

    I also never had surgery ever before my nephrectomy and yes the prospect of facing it is scary. But you've clearly got a great positive attitude - trust in your doctors and nurses and you will be fine. We all went through it so we know you're gonna make it through, too. 

  • Manufred
    Manufred Member Posts: 241 Member
    #7
    Open Cut is OK

    Daniel,

    My surgeon had the same attitude - open cut so he can see what he was doing and what was there.   I was happy with that.  Recovery takes a few weeks but so what.  The scar is just a scar.

    But I got metastasis a few years later anyway, so not as though open-cut stopped it spreading (or it had already happended - who knows?).

    So, no-one really knows.  Stay vigilant after surgery so that if mRCC develops, it can be dealt with promptly - there are now many treatment options that can save your life.

    Best Wishes, Fred 

  • APny
    APny Member Posts: 1,995 Member
    #8
    Daniel, I also had Dr. Russo

    Daniel, I also had Dr. Russo do a partial nephrectomy. While not fun, and wouldn't want to do it again, it was not nearly as bad as I had feared. I had the surgery Monday morning, up walking that evening, home on Wednesday and doing work at my computer (at home) on Thursday. I was able to walk up the stairs and sleep in my own bed, no problem. I bought a recliner since so many people said I would not be able to sleep ok in bed but it wasn't needed. The pain was definitely manageable and I was off pain meds in about 10 days. Best advice, walk as soon as possible after surgery and keep walking. It was winter so I did laps around my house for 5 - 10 minutes every hour and drank tons of water. All the best to you. Dr. Russo is a rockstar! 

    And look at it this way; one small (around 4 inches for me) incision instead of 5 small and one larger for laproscopic. 

  • stub1969
    stub1969 Member Posts: 986 Member
    #9
    Welcome Daniel

    I know exactly how you feel.  Although I was not diagnosed at such an early age, I was (am) a very active person.  Prior to diagnosis, I was training for a half marathon.  I like to think that being in such good health prior to surgery actually helped in my recovery.  Although it was not fun, it was not as bad as I thought it would be.  Since surgery, I've run in three more half marathons and continue to exercise as I did prior to surgery.  You'll be fine long term.

    I do question the reason for not doing robotic surgery.  I'd love to read the research that supports this.  I'm no doctor, but there are several meta-analysis studies that summarize no significant long-term differences between the two.  I'm sure it comes down to the comfort of the doctor--which is most important.  In the big picture, it only matters that the cancer is out and does not return.

    Good luck as you move forward.  If you have questions, we're more than happy to give you our opinion and advice (and support)

    Stub

  • DanielQ
    DanielQ Member Posts: 32 Member
    #10
    Manufred said:

    Open Cut is OK

    Daniel,

    My surgeon had the same attitude - open cut so he can see what he was doing and what was there.   I was happy with that.  Recovery takes a few weeks but so what.  The scar is just a scar.

    But I got metastasis a few years later anyway, so not as though open-cut stopped it spreading (or it had already happended - who knows?).

    So, no-one really knows.  Stay vigilant after surgery so that if mRCC develops, it can be dealt with promptly - there are now many treatment options that can save your life.

    Best Wishes, Fred 

    Thank you Fred. It now sounds

    Thank you Fred. It now sounds less scary to me. 

    I am very sorry to hear about the metastasis. I believe everything will turn out to be okay with you -- you have beaten it once and will beat it again :) 

    Daniel

  • DanielQ
    DanielQ Member Posts: 32 Member
    #11
    APny said:

    Daniel, I also had Dr. Russo

    Daniel, I also had Dr. Russo do a partial nephrectomy. While not fun, and wouldn't want to do it again, it was not nearly as bad as I had feared. I had the surgery Monday morning, up walking that evening, home on Wednesday and doing work at my computer (at home) on Thursday. I was able to walk up the stairs and sleep in my own bed, no problem. I bought a recliner since so many people said I would not be able to sleep ok in bed but it wasn't needed. The pain was definitely manageable and I was off pain meds in about 10 days. Best advice, walk as soon as possible after surgery and keep walking. It was winter so I did laps around my house for 5 - 10 minutes every hour and drank tons of water. All the best to you. Dr. Russo is a rockstar! 

    And look at it this way; one small (around 4 inches for me) incision instead of 5 small and one larger for laproscopic. 

    Hi APny,

    Hi APny,

    Thanks a lot. I am so glad to see another Russo patient here. I have read many of your posts too, and your story of fast recovery is really encouraging. I feel less scared now. 

    I trust Dr. Russo too and am grateful to be in his hands. 

    Might I ask how is the follow up with the tiny nodules in your lungs? I believe everything will turn out to be okay with you too. 

    Best,

    Daniel

  • DanielQ
    DanielQ Member Posts: 32 Member
    #12
    eug91 said:

    welcome DanielQ-

    I don't have any advice for you (my neph was robotic), but I wanted to welcome you to the boards. Sorry you had to join us, but these forums are terrific. We know what you're going through and we're here for you if you have any questions or concerns or if you just want to rant. 

    I also never had surgery ever before my nephrectomy and yes the prospect of facing it is scary. But you've clearly got a great positive attitude - trust in your doctors and nurses and you will be fine. We all went through it so we know you're gonna make it through, too. 

    Thanks Eug. I've got many

    Thanks Eug. I've got many useful advices from this club and feel less scared now. I will face my surgery with my best attitude. I will keep posting about my journey here. 

  • DanielQ
    DanielQ Member Posts: 32 Member
    #13
    stub1969 said:

    Welcome Daniel

    I know exactly how you feel.  Although I was not diagnosed at such an early age, I was (am) a very active person.  Prior to diagnosis, I was training for a half marathon.  I like to think that being in such good health prior to surgery actually helped in my recovery.  Although it was not fun, it was not as bad as I thought it would be.  Since surgery, I've run in three more half marathons and continue to exercise as I did prior to surgery.  You'll be fine long term.

    I do question the reason for not doing robotic surgery.  I'd love to read the research that supports this.  I'm no doctor, but there are several meta-analysis studies that summarize no significant long-term differences between the two.  I'm sure it comes down to the comfort of the doctor--which is most important.  In the big picture, it only matters that the cancer is out and does not return.

    Good luck as you move forward.  If you have questions, we're more than happy to give you our opinion and advice (and support)

    Stub

    Hi Stub,

    Hi Stub,

    Thank you. Yes, I totally agree that good health plays a key role in post surgery recovery. I also run and exercise regularly, but nowhere close to what you achieved -- 3 half marathons are amazing!! I do hope my prevous workouts can give me a shorter and less painful journey after my surgery. 

    Regarding open vs. robotic surgery, the doctor doesn't think the long-term difference is significant, but he has his faith in open more than robotic. I think this varies from doctor to doctor. All I can do is to trust my doctor and his team. 

    Thanks,

    Daniel

  • APny
    APny Member Posts: 1,995 Member
    #14
    DanielQ said:

    Hi APny,

    Hi APny,

    Thanks a lot. I am so glad to see another Russo patient here. I have read many of your posts too, and your story of fast recovery is really encouraging. I feel less scared now. 

    I trust Dr. Russo too and am grateful to be in his hands. 

    Might I ask how is the follow up with the tiny nodules in your lungs? I believe everything will turn out to be okay with you too. 

    Best,

    Daniel

    Thank you for asking. After

    Thank you for asking. After one year (last fall's CT) it was unchanged so I'm a bit less worried but I have another follow up CT in November so getting anxious again. 

    I was absolutely terrified going into surgery, expecting to be a bed-ridden and pain-ridden mess for ages and it wasn't like that at all. After 5 weeks or so I was back on the treadmill twice a day. And I was a lot older than you. Given your youth and Dr. Russo's expertise I think you'll be amazed at your recovery. Just don't push yourself. 

    A couple of suggestions here were terrific and I followed them. When you're ready to go home have a large garbage bag for the seat in the car. That way you can just swivel in without twisting your body. Also have a small pillow to cushion the incision against the seat belt. Buy a large body pillow and a wedge pillow for your bed at home. The body pillow was great support on the incision side. 

  • DanielQ
    DanielQ Member Posts: 32 Member
    #15
    APny said:

    Thank you for asking. After

    Thank you for asking. After one year (last fall's CT) it was unchanged so I'm a bit less worried but I have another follow up CT in November so getting anxious again. 

    I was absolutely terrified going into surgery, expecting to be a bed-ridden and pain-ridden mess for ages and it wasn't like that at all. After 5 weeks or so I was back on the treadmill twice a day. And I was a lot older than you. Given your youth and Dr. Russo's expertise I think you'll be amazed at your recovery. Just don't push yourself. 

    A couple of suggestions here were terrific and I followed them. When you're ready to go home have a large garbage bag for the seat in the car. That way you can just swivel in without twisting your body. Also have a small pillow to cushion the incision against the seat belt. Buy a large body pillow and a wedge pillow for your bed at home. The body pillow was great support on the incision side. 

    Thank you for your advices. I

    Thank you for your advices. I just bought three pillows right after reading your reply :) 

    Good luck for you upcoming followup. I believe it'll be another NED!

     

  • APny
    APny Member Posts: 1,995 Member
    #16
    DanielQ said:

    Thank you for your advices. I

    Thank you for your advices. I just bought three pillows right after reading your reply :) 

    Good luck for you upcoming followup. I believe it'll be another NED!

     

    Thank you, and good luck with

    Thank you, and good luck with the surgery!

  • Manufred
    Manufred Member Posts: 241 Member
    edited September 2019 #17
    DanielQ said:

    Thank you Fred. It now sounds

    Thank you Fred. It now sounds less scary to me. 

    I am very sorry to hear about the metastasis. I believe everything will turn out to be okay with you -- you have beaten it once and will beat it again :) 

    Daniel

    I'm OK

    Daniel,

     

    I did beat the metastasis.  I am a poster-boy for immunotherapy - full details on my profile page.

    You will be OK too, so hang in there.

    Best Wishes, Fred

  • Laura16
    Laura16 Member Posts: 3
    #18
    be very careful about open surgery-the buldge will never go away

    I dont care what they tell you!!!! I had surgery Oct 2013 and I have a ugly football buldge that can be seen a MILE AWAY!! If I had done it all over again I would have try robotic 1st, waited for results THEN been more aggressive.  Mine was 2.9. 

  • Laura16
    Laura16 Member Posts: 3
    #19
    p.s. Good luck & Good speed whichever way you decide

    :-)

  • jroco
    jroco Member Posts: 25
    #20
    Daniel, also join the

    Daniel, also join the facebook group    1-2-3 kidney cancer patient support community and post your question for some more great feedback. Its a community for stages 1, 2 and 3  and is very very active right now.

  • jroco
    jroco Member Posts: 25
    #21
    Daniel,

    Daniel,

    Wow for such a small tumor they sure are moving fast,  an open surgery in a week?  I would get a second opinion unless you can live with the after affects of the open surgery if it turns out to be benign. Maybe yours is just in a bad spot for robot? I dont know.  Dont get me wrong, I was in the same boat as you but i wasted my time on active survelience and during that time reaserched cryo freezing. Its my understanding benign or not the tumor could grow so you are doing the right thing getting it out. I went with the robotic and never looked back. Turned out to be cancer 1.2 CM on pathology.  Me and you are lucky we get to make these choices, alot are not able to make these choices. Good luck to you.

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