Surgeon Recommendations Please

Footstomper · June 2015

Footstomper said:
Dr Arif Hussain
UMMC Baltimore. Skilled flexible pragmatic

dont worry

I have my moments

a_oaklee · June 2015

YR2014 said:
Hello a_oaklee,
I was
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???

Thankyou for explainig it to

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.

APny · June 2015

YR2014 said:
Hello APny,
Dr. Russo was the
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.

Yes, gladly share details.

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

Mike99 · June 2015

YR2014 said:
Hello Mike 99,
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!

Choosing a Doctor

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.

Positive_Mental_Attitude · June 2015

YR2014 said:
Hello APny,
Dr. Russo was the
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.

I also 150% recommend Dr.

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.

Nana4life · June 2015

YR2014 said:
Hello Nana4life,
Thank you
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!

tests

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!

HH431 · June 2015

Mike99 said:
Choosing a Doctor
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.

I would hightly recommend

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.

YR2014 · June 2015

a_oaklee said:
Thankyou for explainig it to
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.

Yes, I've definitely felt
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 · June 2015

APny said:
Yes, gladly share details.
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

Quite amazing APny,
I'm
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 · June 2015

YR2014 said:
Quite amazing APny,
I'm
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!

I'm also small and at the

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.

donna_lee · June 2015

HH431 said:
I would hightly recommend
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.

West Coast resident

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

Surgeon Recommendations Please

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