Open, Robotic, Cryo...oh my!

amuseu
amuseu Member Posts: 8

Hi I had posted back in February (can't find that post) when it was discovered incidentally that I have a 1.7cm RCC on the lower right lobe of my kidney.  I went in becuase I'd been having intermittent severe right side stomach pain which they thought might be gall stones.  No stones.  I do have an umbilical hernia 7cm x 4cm that we've been doing a "wait and see" approach because with my weight (morbidly obese) and it being for the most part asymptomatic, it is evitable that the mesh will tear and they will have to go back in once if not multiple times to repair.  Although I've been working on weight loss for a good 7 years to no success, and discovered that I have the MTHFR gene mutation.  All that aside, I saw Dr. Paul Russo at Sloan Kettering who on this forum is well regarded.  Dr. Russo pioneered the open partial nephrectomy and only does open.  Four months ago he gave me a reprive to find out if I needed the hernai surgery first since my tumor is so small and I'm a "baby in urological world" (according to him).  This week at my follow up and after ultrasound, tumor is 1.8cm he said I need to do the surgery in the next year and let him know when.  

What we didn't discuss are my risk factors given the hernia and weight.  Knowing he is the "open" surgeon, my question is this....what are your experiences and opinions on robotic and cryoablation?  I did seek a 2nd opinion back then from a robotic surgeon but he was so dismissive and unpersonal, he wouldn't even say my name and wondered why I was there to see him without having a biopsy (which we know is a waste of time).  Please let me know your thoughts. I am faced with trying to figure out and scour this forum for open partial surgery information (what happens?  recovery? what is necessary?) in order to plan that.  I aslo am wondering if I should get a 3rd opinion and ask more about the robotic and cryoablation.  My hernia is a concern.  If it get bloated it protrudes and is painful....what will surgery or any other procedure do to that?  Right?? Thank you all, and as I've read from your expertise through experience I just want to make the best decision for me given my individual circumstances.  Information is power and sharing is support.  All my best to you all.

Sincerely,

Adrienne

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    A couple of questions

    Adrienne,

     

    Ask the hernia doctor for his thoughts. Ask Dr. Russo the questions you didn't ask. There is no single right or wrong answer. Sending good karma that you find the best answer for you.

     

     

     

    icemantoo

  • In my personal opinion, the

    In my personal opinion, the "shorter and easier" recover associated with a robotic/laparascopic surgery are overstated.  There have been several people who who have related stories of their robotic surgeries and the recovery time did not seem to any better than what I experienced.

    I went to Dr. Russo, and I hold him in extremely high regard.  As an infant, I had a massive surgergy to correct an issue with my intestine, and the doctors deemed my abodomen "hostile" and not a good candidate for robotic/laparascopic surgery.   After the surgery, I went home one day later, and I started walking around my neighborhood that day.  The day or two after were rough as I recall, but not terrible.  By day 3, I was walking 6 miles per day. 

    Dr. Russo has done so many surgeries that he has probably seen every variation and complication possible.  My tumor was in a particularly tricky location, and he was very confident going in that he would get it.  And he did.  I have my doubts that I would have had the same outcome with a robotic surgery.  Dr. Russo preserved 95% of my affected kidney.  I could go on and on.  The man is the consummate pro, and to boot, he is a very cool guy to talk to.  He put me right at ease from the moment I walked into his office.  I would go to him if I were you because you will be in one of the best set of hands to handle an partial open nephrectomy. 

  • Bay Area Guy
    Bay Area Guy Member Posts: 618 Member
    Everyone's different.  My

    Everyone's different.  My experience with the robotic partial was very good.  I had a little discomfort, but no real pain.

    As for cryo versus surgery, all I can do is tell you are the success rates (success defined as cancer free for five years) that my urologic oncologist and my surgeon quoted me back in 2016 for a similar sized and sited lesion.  Cryo had a success rate in the low 90% range, while surgery had a success rate in the very high 90% range.

  • Everyone's different.  My

    Everyone's different.  My experience with the robotic partial was very good.  I had a little discomfort, but no real pain.

    As for cryo versus surgery, all I can do is tell you are the success rates (success defined as cancer free for five years) that my urologic oncologist and my surgeon quoted me back in 2016 for a similar sized and sited lesion.  Cryo had a success rate in the low 90% range, while surgery had a success rate in the very high 90% range.

    Agree about everyone being

    Agree about everyone being different. In my opinion, the doctor may be more important than the procedure (robotic/open).  My health insurance provider was trying to railroad me into staying in state, and I could not find a doctor who would do an open partial nephrectomy.  I met with 1 or 2 surgeons who did robotic, but in addition to not being a good candidate for that type of surgery, I was not comfortable that they had the skill and experience that Dr. Russo had.

    Like you said, we are all different.  Younger and/or healthier people will generally have an easier time with the surgery and recovery.  The OP asked for info on how recovery was for open surgery, and mine was pretty good. 

  • APny
    APny Member Posts: 1,995 Member
    I agree with Positive_Mental.

    I agree with Positive_Mental. Dr. Russo was also my surgeon and my open neph recovery was no worse than anyone's who had it done robotic/lap way. Home on the third day and doing work at my computer at home on the fourth. I would focus on the weight factor and see which is more recommended in your situation: open or robotic. I'm not sure robotic is a particularly good approach for someone severely overweight, but I'm no expert, that's for sure. That's what I'd discuss with Dr. Russo and/or whoever else you consult. All the best to you!

  • amuseu
    amuseu Member Posts: 8
    edited June 2018 #7
    Many thanks to you all.  Yes,

    Many thanks to you all.  Yes, I have seen Dr. Russo now twice and am comfortable and confident with his abilities to do an open.  I am just not sure about the hernia issue along with it and what approach is bes to not aggravate an already potentially ticking time bomb.  I realize that I am very scared about the surgery what happens and the recovery, more fearful than than any thoughts of "is this cancerous?" Just trying to make an informed decision.  For me the cryo vs open/robotic question is one of least resistance.  Do I do that an have, if it actuall is, minimal invasion thus not aggravating the hernia and better for me given the weight issue with regards to anesthesia etc...Anyone who knows about cryo might help.  Thanks, Bay Area Guy, for the stats.  

  • APny
    APny Member Posts: 1,995 Member
    edited June 2018 #8
    The problem with cryo, as far

    The problem with cryo, as far as I understand, is that it's impossible to do pathology and can't tell about margins. Again, I would discuss that with Dr. Russo along with getting his thoughts on what an open surgery might do to the hernia. It may have no effect at all. I would definitely ask him these questions before making a decision one way or another. If you're just fearing the open, it's not fun but it's nowhere near as bad as my imagination made it. Reading about others' robotic/lap suregeries, mine didn't seem any worse. In fact, I only have one small incision instead of five, and to me, more incisions, the more chance for infection.

  • medx
    medx Member Posts: 2
    edited June 2018 #9
    Go with the cryoablation

    Hi amuseme.

    I logged in and registered just so I could answer your question.  Our situation is similar.  I don't use spell check so sorry if I butcher words.  I am morbidly obese male (over 400 lbs) and have been all my life , now 60 yo. Always worked full time, never been laid off, still working for now.  My arthritic hip is now causing mobility problems.  Anyway, in short, had riight open nephrectomy late 2014.  Two foci of RCC-11.3 cm clear cell RCC and 1.8 cm papillary RCC that invaded perinephric fat therefore stage T3a.  Because of my size the surgeon went in thru my flank (along belt line) , right side.  I had long recovery and was on wound vac for 87 days.  Also I'm diabetic I should mention.  Scans were ok until march 2016, growth in colon turned out to be early stage colon cancer.  Had right helicolectomy, laproscopic, found good surgeon at Cleveland Clinic.  Recovered from that during late 2016.  It appears to be taken care of now. Scans ok until mid 2017.  1.7 cm enhancing solid mass seen on my remaining left kidney, exophytic lower pole. Cryoablation with CT guidance recommeded by my kidney urologist/surgeon.  However, I'm to big for CT scanner at local hospital (a really good one by the way).  Consulted with RCC doctor at Cleveland Clinic who spoke with an interventional radiologist doctor.  They were going to use CT guidance with "cone beam" because of my size.  Guidance is used to place the cryo (freezing) probes through your skin and into the mass for freezing.  That didn't work as expected during the actual operation,  so they used new software to merge an existing ultra sound image with my most recent existing CT scan.  Pretty creative huh?  It worked well.  4 days after CT scan showed soild mass was successfully ablated.  Just provided a new CT scan done locally to Cleveland Clinic Dr.  Got report no sign of recurrence...thats good!  I'll send another scan around Oct.-Nov.  My point is that for extemely fat people like you and me open and laprascopic surgeries are tough to go through and I got a really good outcome with cryoablation which was way, way easier then cutting into me.  Thats my story, just food for thought.  Don't be afraid to take your time with this and explore your options!  P.S. You take a nice picture!

  • amuseu
    amuseu Member Posts: 8
    medx said:

    Go with the cryoablation

    Hi amuseme.

    I logged in and registered just so I could answer your question.  Our situation is similar.  I don't use spell check so sorry if I butcher words.  I am morbidly obese male (over 400 lbs) and have been all my life , now 60 yo. Always worked full time, never been laid off, still working for now.  My arthritic hip is now causing mobility problems.  Anyway, in short, had riight open nephrectomy late 2014.  Two foci of RCC-11.3 cm clear cell RCC and 1.8 cm papillary RCC that invaded perinephric fat therefore stage T3a.  Because of my size the surgeon went in thru my flank (along belt line) , right side.  I had long recovery and was on wound vac for 87 days.  Also I'm diabetic I should mention.  Scans were ok until march 2016, growth in colon turned out to be early stage colon cancer.  Had right helicolectomy, laproscopic, found good surgeon at Cleveland Clinic.  Recovered from that during late 2016.  It appears to be taken care of now. Scans ok until mid 2017.  1.7 cm enhancing solid mass seen on my remaining left kidney, exophytic lower pole. Cryoablation with CT guidance recommeded by my kidney urologist/surgeon.  However, I'm to big for CT scanner at local hospital (a really good one by the way).  Consulted with RCC doctor at Cleveland Clinic who spoke with an interventional radiologist doctor.  They were going to use CT guidance with "cone beam" because of my size.  Guidance is used to place the cryo (freezing) probes through your skin and into the mass for freezing.  That didn't work as expected during the actual operation,  so they used new software to merge an existing ultra sound image with my most recent existing CT scan.  Pretty creative huh?  It worked well.  4 days after CT scan showed soild mass was successfully ablated.  Just provided a new CT scan done locally to Cleveland Clinic Dr.  Got report no sign of recurrence...thats good!  I'll send another scan around Oct.-Nov.  My point is that for extemely fat people like you and me open and laprascopic surgeries are tough to go through and I got a really good outcome with cryoablation which was way, way easier then cutting into me.  Thats my story, just food for thought.  Don't be afraid to take your time with this and explore your options!  P.S. You take a nice picture!

    Thanks Medx, I am from Cland

    Thanks Medx, I am from Cland originally and used to work at CCF.  You were in expert hands all the way around.  Can you tell me more about the Cryo procedure?  Also who determined it was a better route for you the surgeon or anesthesiologist or pre-op work up etc..?  Also, were they able to get pathology fromt the cryo?  I've read mixed things about whether or not that is possible, thus a pro/con to that as an option.  

  • medx
    medx Member Posts: 2
    edited July 2018 #11
    amuseu said:

    Thanks Medx, I am from Cland

    Thanks Medx, I am from Cland originally and used to work at CCF.  You were in expert hands all the way around.  Can you tell me more about the Cryo procedure?  Also who determined it was a better route for you the surgeon or anesthesiologist or pre-op work up etc..?  Also, were they able to get pathology fromt the cryo?  I've read mixed things about whether or not that is possible, thus a pro/con to that as an option.  

    Well, when the solid enhancing mass was located on my remaining kidney from a CT scan with contrast,my urologist surgeon said given its location and size he said this is a nobrainer have it ablated.  He told me how difficult my original right nephrectomy was because of my size and i had a long recovery.  i tried to get it done locally (metro Detroit) but i was too big for the CT scanner with the need for space to place the cryo probes.  TRIED A DRY RUN WITH ULTRA SOUND GUIDANCE BUT THE LOCAL INTERVENTIONAL RADIOLOGIST (WHO TRAINED AT cc BY THE WAY) said he could not position me so that he had a real good real time look at the mass.  He said I think he had an 80-85% chance of getting it all the first time.  (you can repeat cryoablations by the way). Well I wanted a higher number than that so I had already had a consult arranged with a CC RCC specialist , so when I was there for that I also had arranged for interventional radiology to get an opinion about the cryoablation.  I was pleased and confident they could handle it.  no biopsy requested, none offered,  Small masses that enhance with dye are 80% cancerous.  Given my history of RCC I did not feel a biopsy would be helpful.  Maybe could have found out papillary vs clear cell, but I just wanted it ablated. They probably would have done it if I pushed the issue. The proceedure is not bad but I'm a macho guy by the way...just kidding.  They put you under anaestesia and reported that they spent most of the proceedure time trying to position me just right and place they probes.  They ended up using that software I mentioned .  Recovery  a couple days maybe.  They have to ablate out from the perimeter of the mass to get it all.  You'll be on a catheter a couple days while you urine goes from red to yellow again.  Not much pain at all.  I stuck around for a follow up ct scan, but mainly because snow storms prevented my ride from coming to get me.  I know alot has been said regarding this proceedure and open vs lapro vs robotic vs cryo.  I think you'll do ok with the cryo.  Overall its just easier on your body, at least i think so!.  I tired of typing I'm out!