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Surgeon Recommendations Please

YR2014
Posts: 13
Joined: May 2014

Hello everyone,

I'm relatively new here, I posted once quite some time ago and would like to thank everyone who took the time to view and/or respond to my inquiry, this has all been so confusing and depressing to me so I sort of disappeared from life for a while.

A short background: A year and a half ago I suddenly developed a horrible stabbing pain near my rib cage. I figured it was transient in nature and would pass. When it didn't I went to the doctor and requested an ultrasound of my abdomen which found a 1.5 x 1.2 cm septated cyst on the lower part of my kidney. The second ultrasound also classified it as a septated cyst.

Later I went to the local hospital to get a CT scan and the radiologists categorized it as a simple cyst, compounding my confusion.
I live in a small town in the middle of nowhere and unfortunately there is not one doctor who is knowledgeable about my situation or who can help me, so I've been sitting on this problem for a while.

If anyone would be so kind as to post the name of their surgeon/doctor, I would be very grateful. Anywhere in the U.S. is fine, I'm willing to travel. Thank goodness for airline miles! I would like to find a knowledgeable doctor who can hopefully perform a partial nephrectomy, although I realize by reading others stories, a partial is not always possible.

Perhaps if enough people respond this could serve as a current directory for others who are looking for reviews from real people who have been through the procedure and would recommend their surgeon.

Thanks!

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

Yr2014,

 

Perhaps if you let us know where we are we can give you some suggestions.

 

 

Icemantoo

YR2014
Posts: 13
Joined: May 2014

Hello icemantoo, I'm on the west coast. However, I'm willing to travel.

Thanks,

YR2014

jason.2835
Posts: 337
Joined: Nov 2014

YR,

My surgeon was Dr. Costas Lallas, urologic surgeon at Jefferson University Hospital.  The guy knows his stuff.  He specializes in minimally invasive, robotic-assisted surgery.  I can tell you that my recovery was pretty easy, considering.  Had very little pain.  If you can find a surgeon wherever you are who also uses the DaVinci robot, grab the bullet.  

- Jay

YR2014
Posts: 13
Joined: May 2014

Thank you jason.2835 (Jay), glad to hear your recovery was smooth sailing and thank your for the surgeon recommendation and your vote for the DaVinci robot.

I have a very low pain threshold so minimally invasive sounds right up my alley.

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

I'm happy to recommend my surgeon, Dr. Jaime Landman. He's head of the urology department at the University of California, Irvine, in Orange County, California. I was very happy with his surgical team.

You can read about Dr. Landman here: http://www.kidneycancerinstitute.com/ Click on "About Dr. Landman"

Todd

 

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

I've also been very happy at the City of Hope. Look at the City of Hope website and find Dr. Clayton Lau. Also, a top notch surgeon doing minimally invasive kidney surgery.

Todd

Nana4life's picture
Nana4life
Posts: 78
Joined: May 2015

I too went to Dr. Landman. He's great and extremely good at what he does. I am going for another opinion with a completely different university not because I didn't like Dr. Landman. I just want to know other opinions on my situation and how to best go forward with my situation now that I had this thing removed. But I would strongly agree that Dr. Landman and his team are great! Wherever you go be prepared before you go, make sure you have all tests and questions ahead of time. With large teaching hospitals they are extremely busy an getting quick appointments can be hard. I had to stay proactive with calling them and getting things done quickly. I'm a bit impatient. Good Luck to you this site helps tremendously.

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

I did decide to move to a hospital with a medical oncologist for follow-up after Dr. Landman did my surgery. I think that's the prudent approach. For followup advice, I've seen Dr. Figlin at Cedars, Dr. Pal at City of Hope and Dr. Quinn at USC Keck School of Medicine. All are experienced RCC medical oncologists.

I had no problem getting into Dr. Landman quickly when I explained my situation. He saw me the next week after my tumor was found and scheduled my surgery within a month. I did stay on top of his staff, though. He's a very busy guy and always came in with an entourage. Write all your questions down and take a friend with you if you see him.

Todd

YR2014
Posts: 13
Joined: May 2014

Thank you Todd for all the names you provided. I do have an appointment with Dr. Landman in the beginning of July for a consult. My tests are 7 months old so I keep calling to see if new tests can be done while I'm there.

I can't get new tests in my neck of the woods, except maybe at the ER, and I'd hate to cancel, but I'm not sure he could tell me much about my current condition with tests as old as mine.

I was under the (likely incorrect) belief that the surgeon ordered the tests, decided what should be done based upon his opinion of the test results i.e. surgery, wait, or medication, and then also did follow-up.

Could you explain to me how it really works, or should work? I fear I'm doing everything wrong and feel completely lost. I also don't want to waste his time asking him to explain what is wrong with me if he only deals with the surgery aspect.

None of my tests have been reviewed by anyone but myself and Google (not exactly an expert opinion) due to circumstances. I only have the radiologists interpretation. Should I be seeing a renal oncologist prior to seeing Dr. Landman?

Thank you so much for any response!

YR2014
Posts: 13
Joined: May 2014

Hello Nana4life,

Thank you for the second vote for Dr. Landman. Luckily I have an appointment in early July with him.

I think it is wise to get more than one opinion. As educated/intelligent as the doctor(s) may be, they are only human and could miss something that perhaps another doctor catches. I've also noticed different doctors can have very different opinions on the same issue. Then it becomes the patients responsibility to decide on the best course of action from the options presented. What I've learned is to trust my intuition.

My tests are 7 months old so I asked if I could be tested there, hopefully I'll hear back on Monday from his nurse.

If you feel okay with sharing could you tell me what kind of tests he would expect me to have? There aren't any doctors familiar with this issue within 300 miles of my locale, so I have to go to the ER or a walk-in clinic, request a specific test and hope they'll oblige. Occasionally they will.

Thank you and good luck to you as well!

Nana4life's picture
Nana4life
Posts: 78
Joined: May 2015

I had a CT scan from another hospital when i first went to Dr. Landman. But he wanted more detail so I had some blood work and another CT scan with contrast.After that I had a needle biospy. For you I m sure you should just wait until you see if he will then order the necessary tests for you. Hope this helps! Take care and let me know how things go.

Blessings to you!

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

Dr. Ronald MacIntyre. 

DaVinci Robotic Surgery. 

I could not say enough good things about him. 

YR2014
Posts: 13
Joined: May 2014

Thank you sblairc. I love your avatar :-)

Mike99's picture
Mike99
Posts: 22
Joined: Mar 2003

just last Thursday I had my Left Kidney removed by a Doctoer who is considered the best in the field. His name is Dr. Alex Kutikov an he is at Fox Chase Cancer Center. (Fox chase.org) his resume is listed on their website and he is highly qualified. I was comfortable with him and his star from my first appointment and do not worry about anything. He took a lot of time to explain every aspect of my treatment and gave my wife and I plenty of time to ask questions. He is a wonderful doctor as well as a wonderful person. He truly cared about my comfort, pain level, etc. I don't know where you live but i highly recommend him. Best of luck and I pray you will find peace with whomever you choose.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

UMMC Baltimore. Skilled flexible pragmatic

YR2014
Posts: 13
Joined: May 2014

Hello Footstomper, I've read some of your posts and you are one tough cookie, funny too, despite the situation. I hope to be the same way someday!
Thank you for the recommendation.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I have my moments

YR2014
Posts: 13
Joined: May 2014

Hello Mike 99, congratulations on your recent successful surgery!

This was supposed to be underneath a different post, well Mike 99 I hope you see this.

I looked Dr. Kutikov up and it seems he is skilled in many different approaches to kidney surgery, which is always a plus since sometimes the doctor may need to change game plans once inside.

I'm on the west coast, but will travel where necessary to find the right doctor for me.

I'm often scared to the point of experiencing panic attacks so a doctor with a comforting and confident attitude will definitely help to calm my nerves.

Thank you for your recommendation and detailed report on how your appointments and surgery went. I pray you have a speedy recovery, take care!

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

I whole-heartedly recommend Dr. Paul Russo at Sloan Kettering in NY. He's a urologic oncologist who specializes in partial nephrectomies. You can watch him talk on Youtube, etc. He's very well know. He saved 85 percent on my kidney and while the surgery was not a picnic it went very well. I'm so glad I had him.

a_oaklee
Posts: 526
Joined: Nov 2013

What am I missing here?   Doesn't YR just need to see a good urologist, or nephrologist?   YR has a very small septated cyst that hasn't changed in a year and a half?   I'm confused.

YR2014
Posts: 13
Joined: May 2014

Hello a_oaklee,

I was referred to a nephrologist, but told that he doesn't deal with anything other than kidney function issues and that my complex septated cyst was not a function issue.

I then tried a urologist and was declined as well despite my referral, no reason given. No other nephrologists or urologists in the area.

I'm not sure who to see and the line for me is blurred between urologist, urologic oncologist, and a renal surgeon who may or may not also be a urologic oncologist???

So I figured I should seek out a surgeon, perhaps he can tell me what is going on and what he recommends.

I did read that a complex septated cyst could be cancerous, and I haven't been able to speak with a specialist to class mine or get any info for that matter.

I do hope my issue is minor, as does everyone who has a growth found that shouldn't be there. I must say it causes wicked pain 24/7, perhaps it is the location rather than size???

a_oaklee
Posts: 526
Joined: Nov 2013

Thankyou for explainig it to me YR.  You must feel a bit frustrated.  I would.  Is it correct that it has t changed in a year and a half?  That would be a good sign 

We live in the boonies too.  One urologist who wanted to pounce on my husbands kidney tumor and practice his skills in our town.  We declined.  Surprisingly our family practice doctor lined up all of our other appts in far away medical centers.  Doctors help doctors.  Its what he would have done for his own family.  

I think you need a major medical center urological surgeon to start with.

YR2014
Posts: 13
Joined: May 2014

Yes, I've definitely felt frustrated. Prior to the kidney growth I had zero pain so I knew something was really wrong.

First I saw a friend's primary care physician. He refused to order an ultrasound of the entire right abdomen area as I requested, only the gallbladder.

After two additional months, I finally got the order elsewhere for the test that revealed the problem.

Glad you and your husband passed on the opportunity for that urologist to "practice" using your husbands kidney to gain experience. Sadly, I think there are some people who would go for it....scary.

To answer your question: The measurements in my original post were solely from memory, so slightly off.

First ultrasound - 1.1 x 1.3 x 1.2 cm (April 14).
Second ultrasound - 1.4 x 1.1 cm (Dec. 14).

Does anyone know why I am given more than one measurement? Length, width, height perhaps. Almost everybody else states their growth size as a single number. Should the values be multiplied together?

I've searched Google extensively and found no answer. This has really been bothering me because I feel I don't know the true size. If anyone could explain I would be very grateful for that bit of elusive knowledge.

YR2014
Posts: 13
Joined: May 2014

Hello APny,

Dr. Russo was the first surgeon I discovered over a year ago through a Google search which actually linked me to this site. I'd love to see him, especially since he focuses on partial nephrectomies like you stated. Thank you for sharing your story about your surgery. That is so great that he was able to save almost your entire kidney. Wonderful news and congratulations!

Would you mind sharing how long ago you had your surgery and how long recovery took? If I recall correctly, he uses the open approach which can have a longer healing period, but it seems he is able to get a better look at the kidney using that method.

Thank you.

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

Yes, gladly share details. Dr. Russo explained to me the open vs. lap procedure and completely convinced me that the open was the way to go. My surgery was March, 2014, so I'm a little past one year. Even though it was an open surgery, it was remarkable how quickly I recovered. My surgery was Monday, that same evening they had kicked me out of bed and had me walking, and on Wednesday they released me. So two days in hospital. My incision is just a bit over 4 inches and thin as a hairline. Now of course it all depends on tumor location, and so forth, but I would characterize mine as a lot easier than I had feared. I was off pain killers after one week, using only Tylenol when needed. Reading people's recovery time with lap surgery I would say mine was not significanlty different or longer. I was at my computer sitting up doing work by Thursay after my surgery. Not a walk in the park but not the horrible pain I expected either.

A_oaklie, yes, in the last paragraph of the original post YR2014 asked for recommendations for our surgeons. So that's why we're doing that. Hopefully it's just a harmless cyst and he won't have any need for them Smile

 

YR2014
Posts: 13
Joined: May 2014

Quite amazing APny,

I'm thrilled that you had a relatively easy recovery. I'm sure Dr. Russo's experience helped speed that up. It's wonderful that your scar healed so well, it sounds as if it is barely perceptible to the eye. Being able to ditch the stronger pain killers after one week is also fabulous and a good sign when recovering. Since you're over a year post op, do you feel 100% now?

I personally noticed for myself, that with an elective procedure (meaning I went in completely healthy) I was able to stop the pain killers easily in about 10 days; however, when I had an appendectomy the intensity of the pain and length of time it lasted was much longer. I was placed in the children's ward with my own room for this very reason, hospital's decision, not mine...not that I'm complaining :-)

I'm an not anywhere near as strong and tough as the majority on this forum. I will likely be without any assistance, therefore I'm doubly concerned about pain control after the procedure.

I know it is mostly impossible to determine from a user name, so just to clarify I'm a small stature female, 95 lbs plus or minus a few. Plus a few lbs now since I can't run and lift weights anymore. From my reading, I also seem to be one of the youngest members.

Thank you for sharing your story APny!

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

I'm also small and at the time of my surgery weighed around 115 but fortunately had my husband to help out when I got home. If you do need surgery try to have someone there for you at least for a few days. And if you need pain killers for longer, so be it; don't be afraid to use them. That's why they're there. Everyone is different and different surgeries have different results so it's impossible to predict how you will be after should you need it. I do feel 100 percent back to normal. Get tired a little more easily perhaps but otherwise no issues. Hopefully yours will turn out to be a harmless cyst and you won't need to go through any of this but if yes, it's doable and not nearly as bad as you probably fear.

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

I also 150% recommend Dr. Russo.  The first urologist I went to grimaced when he looked at my CT scans and told me that they would likely need to remove my entire kidney.  I called Dr. Russo's office the same day, and I was in his office 1 week later.  Dr. Russo is not only a leader in his field, but kind, honest compassionate, funny and just a regular guy.  If I met him on the street, not knowing him, I would never guess he is a world-renknowned urolgist oncologist.  My procedure was in July 2014, and my experience was the same as apNY's.  In Thursday a.m., walking Thursday evening, home on Saturday, and on Monday I walked 6 miles!  Dr. Russo preserved 95% of my kidney with an open procedure. In the 2 or 3 meetings I have had with Dr. Russo, he has not only educated me, but we have had many laughs.  I am going for my one year follow up in July.  I spoke to another patient of Dr. Russo's before undergoing surgery, and he raved about him too.  And I sent a colleague there with his father, and they thanked me profusely for referring them to such a wonderful professional.  Sorry if I am gushing, but Dr. Russo is an excellent doctor and a wonderful man. 

Mike99's picture
Mike99
Posts: 22
Joined: Mar 2003

YR,

 Let me know if you decide to make the trip to Foxchase Cancer Center. I will roll out the red carpet for you and come to see you. That goes for anyone who should decide to go to FCC. Best of Luck with your decision and I hope you are up and about in no time.

HH431
Posts: 41
Joined: May 2015

I would hightly recommend Dr. Craig Rogers of Henry Ford Hospital in Michigan.  He's Director of Urology and a surgeon.   Henry Ford specializes in kidneys in general as is known to be outstanding for that.

Dr. Rogers just did a partial neph on me two weeks ago at the West Bloomfield hospital.  Very good experience.  It was a very deep 4.2 CM tumor also, but he managed to still do the job.  Got the pathology back and it was a clear cut revealing he got all of it.

Great guy and highly specializes in partials with Robotics.  The first opinion I got from a doctor out of a different hosptial wanted to remove the entire kidney.  I didn't want to lose the whole kidney especially at 43 yrs old.

So, I sought out Dr. Rogers and everything went really well.  Very nice guy and will spend a lot of time with you...as well as his staff and doctors who work with him.

I feel very fortunate.

donna_lee's picture
donna_lee
Posts: 968
Joined: Feb 2009

There are many great surgical teams out here.  The one I had, Dr. Mitchel Sokoloff, was head ofSurgical Urologic Oncology at Oregon Health and Science University.  In 2008 he moved to the University of Arizona teaching hospital in Tucson, AZ to head up a similar unit.  If you haven't found a physician or made an appointment, yet, I highly recommend him.  He has also been doing "nephron saving" robotic surgery for 9 years.

Donna

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