Newly diagnosed and upcoming surgery

Pittston

My 35 year old son was just told he has a mass on his kidney.  The 6.8 mass was detected incidently on ultrasound.  Immediately, he  had a CT scan with contrast and that states possibly oncocytoma or RCC. He had his first appointment with urologist and the urologist feels it is most likely RCC. My son has appointments to consult with two surgeons in our area. This week he is meeting with Dr. Russo at MSK and Dr. Badani at Mt. Sinai. The urologist told him he may be a candidate for robotic surgery and partial nephrectomy.

He will be having surgery very soon so I am just wondering if anyone can help guide us in the right direction.

icemantoo

Welcome to the club

Welcome to the club which no one in their right mind would volunteer  to join.  Choose the surgeon your son is most comfortable after you listen to the options presented. There is not only one clear option. We have all been there and done that.

 

 

Icemantoo

Pittston

Thank you. It is a nightmare

Thank you. It is a nightmare but am grateful that we live near some of the finest hospitals and surgeons.

stub1969

Hi, Pittston

As Ice said--this is not a club people want to join, BUT--this is the place to be if you have RCC.  This is definiately scary stuff--expecially at your son's age.  Speaking of that--did the surgeon talk to your son about contacting the National Institute of Health?  Imaging is getting better and more common, making diagnosis of RCC better and many times caught at earlier stage, at his age and with the size of the tumor, this could be a genetic link.  It may be worth contacting them.  I've read that anyone diagnosed under the age 45 may have a genetic link and should contact NIH for input.  I was 47 when I was diagnosed, which is still young for this type of cancer.

In any event--I'm glad you found us.  Ask questions that you have and keep us posted on your son's  journey.  We've all been there and understand what your son is going through.

Blessings--

Stub 

APny

I had Dr. Russo and he's my

I had Dr. Russo and he's my hero. He saved 85 percent of my kidney and aside from being an incredible surgeon, he's also a fantastic person wtih a great bedside manner. However, he does not do robotic/lap surgery and he explained to me why not. He totally convinced me. But he will gladly refer your son to a colleague who would do it robotically if it's possible. Even though mine was open it went so well, I was home in two days and my recovery was relatively stress free. Small incision, maybe 4 inches at most. All the best to you and your son. Dr. Russo is a gem!

Pittston

APny said:

I had Dr. Russo and he's my

I had Dr. Russo and he's my hero. He saved 85 percent of my kidney and aside from being an incredible surgeon, he's also a fantastic person wtih a great bedside manner. However, he does not do robotic/lap surgery and he explained to me why not. He totally convinced me. But he will gladly refer your son to a colleague who would do it robotically if it's possible. Even though mine was open it went so well, I was home in two days and my recovery was relatively stress free. Small incision, maybe 4 inches at most. All the best to you and your son. Dr. Russo is a gem!

Thank you. I have read your

Thank you. I have read your other posts and some reviews on other sites. We believe in MSK, my husband had surgery there (for a different cancer) in 2015 and is still seeing his surgeon every 6 months. I appreciate your help.

Pittston

stub1969 said:

Hi, Pittston

As Ice said--this is not a club people want to join, BUT--this is the place to be if you have RCC.  This is definiately scary stuff--expecially at your son's age.  Speaking of that--did the surgeon talk to your son about contacting the National Institute of Health?  Imaging is getting better and more common, making diagnosis of RCC better and many times caught at earlier stage, at his age and with the size of the tumor, this could be a genetic link.  It may be worth contacting them.  I've read that anyone diagnosed under the age 45 may have a genetic link and should contact NIH for input.  I was 47 when I was diagnosed, which is still young for this type of cancer.

In any event--I'm glad you found us.  Ask questions that you have and keep us posted on your son's  journey.  We've all been there and understand what your son is going through.

Blessings--

Stub 

Thank you. I will look into

Thank you. I will look into this.

Tesla1

Three radioligists and 2

Three radioligists and 2 surgeons told me that based on MRI and CT images that I had a RCC. Turned out to be an oncocytoma. 

sblairc

My husband's tumor was that size. No mention of oncocytoma

So. . . we were told that there was absolutely NO chance the tumor was benign. I think that the fact they mentioned oncocytoma is a good sign of hope to have. Usually with tumor's that size, they are highly vascular and light up on CT scans. I will be crossing my fingers for your son.  Good luck. 

Pittston

Tesla1 said:

Three radioligists and 2

Three radioligists and 2 surgeons told me that based on MRI and CT images that I had a RCC. Turned out to be an oncocytoma. 

Wow! Thank you for giving us

Wow! Thank you for giving us some hope. Today the Mt. Sinai surgeon said 90% it is RCC. Tomorrow we will get 2nd opinion with Dr.Russo at MSK 

 

 

 

 

Pittston

sblairc said:

My husband's tumor was that size. No mention of oncocytoma

So. . . we were told that there was absolutely NO chance the tumor was benign. I think that the fact they mentioned oncocytoma is a good sign of hope to have. Usually with tumor's that size, they are highly vascular and light up on CT scans. I will be crossing my fingers for your son.  Good luck. 

Thank you for giving us hope.

Thank you for giving us hope. All the best.

Pittston

APny said:

I had Dr. Russo and he's my

I had Dr. Russo and he's my hero. He saved 85 percent of my kidney and aside from being an incredible surgeon, he's also a fantastic person wtih a great bedside manner. However, he does not do robotic/lap surgery and he explained to me why not. He totally convinced me. But he will gladly refer your son to a colleague who would do it robotically if it's possible. Even though mine was open it went so well, I was home in two days and my recovery was relatively stress free. Small incision, maybe 4 inches at most. All the best to you and your son. Dr. Russo is a gem!

We are off to see Dr. Russo

We are off to see Dr. Russo tomorrow. Can you explain to me why Dr. Russo doesn't do robotic? Does he recommend it for some patients? Or is he just more traditional in his approach to both radical and partial?

I know he has an excellent reputation and I believe in MSK. However, my son' s primary doctor recommended he see a surgeon at Mt. Sinai who does robotic surgery for RCC so that's who he saw immediately. 

We will be interested in hearing what Dr. Russo advises.

 

APny

Pittston said:

We are off to see Dr. Russo

We are off to see Dr. Russo tomorrow. Can you explain to me why Dr. Russo doesn't do robotic? Does he recommend it for some patients? Or is he just more traditional in his approach to both radical and partial?

I know he has an excellent reputation and I believe in MSK. However, my son' s primary doctor recommended he see a surgeon at Mt. Sinai who does robotic surgery for RCC so that's who he saw immediately. 

We will be interested in hearing what Dr. Russo advises.

 

It was almost four years ago

It was almost four years ago and I was a wreck so my memory is a bit faulty. He explained that with open he can handle the kidney, see it better, control bleeding better, and some other things that I no longer remember but made a lot of sense. He also explained that with robotic you're not right there and if something should happen by the time you convert to open you can bleed out. Again, forgive me but with all the anxiety while he was talking and all this time passing I no longer remember so clearly. He will explain it to your son. But if not convinced by all means ask about robotic/lap colleague and he'll recommend one. I believe Dr. Coleman does them. In any case, what he told me made sense and I went with him. Considering that he pioneered partial neph and is a leading expert nation wide I felt I was in good hands. Reading about people's lap/robotic surgeries and recovery I can honestly say mine was no different. And on the plus side, I only have one incision instead of five or six.

Pittston

APny said:

It was almost four years ago

It was almost four years ago and I was a wreck so my memory is a bit faulty. He explained that with open he can handle the kidney, see it better, control bleeding better, and some other things that I no longer remember but made a lot of sense. He also explained that with robotic you're not right there and if something should happen by the time you convert to open you can bleed out. Again, forgive me but with all the anxiety while he was talking and all this time passing I no longer remember so clearly. He will explain it to your son. But if not convinced by all means ask about robotic/lap colleague and he'll recommend one. I believe Dr. Coleman does them. In any case, what he told me made sense and I went with him. Considering that he pioneered partial neph and is a leading expert nation wide I felt I was in good hands. Reading about people's lap/robotic surgeries and recovery I can honestly say mine was no different. And on the plus side, I only have one incision instead of five or six.

Thank you. He definitely gave

Thank you. He definitely gave us food for thought about the doing it open. I am concerned and just want my son to have the best outcome. Not sure what he will do, yet. He has to mull it over and decide whether to go with a surgeon at Mount Sinai who does mainly robotic or have it done at MSK and do the open with Dr. Russo. i always feel that if it's cancer and we live near MSK, then that's where we go. 

APny

Pittston said:

Thank you. He definitely gave

Thank you. He definitely gave us food for thought about the doing it open. I am concerned and just want my son to have the best outcome. Not sure what he will do, yet. He has to mull it over and decide whether to go with a surgeon at Mount Sinai who does mainly robotic or have it done at MSK and do the open with Dr. Russo. i always feel that if it's cancer and we live near MSK, then that's where we go. 

He could always ask for a

He could always ask for a surgeon at MSK who does robotic if that's the way he wants to go. Ultimately it's his decision and most likely whatever route he takes will work out just fine. My open surgery was no worse than robotic/lap ones I'm reading about on this forum. Monday morning surgery, that evening walking around the ward, home Wednesday and doing work at my computer Thursday morning. Small incision since Dr. Russo is a rockstar Pain very manageable and I was off pain meds after about 10 days. So if he should decide to go with Dr. Russo tell him open is no big deal. At least it wasn't for me.

Pandabear1011

I had my right kidney removed

I had my right kidney removed in May 2014. My tumor was 6cm x 4.5cm x 3.5 cm grade 2. That was over 3 years ago and I'm still cancer free and doing great. I was 48 when diagnosed and I recovered from the nephrectomy quickly. Good luck to your son.

 

Pittston

APny said:

He could always ask for a

He could always ask for a surgeon at MSK who does robotic if that's the way he wants to go. Ultimately it's his decision and most likely whatever route he takes will work out just fine. My open surgery was no worse than robotic/lap ones I'm reading about on this forum. Monday morning surgery, that evening walking around the ward, home Wednesday and doing work at my computer Thursday morning. Small incision since Dr. Russo is a rockstar Pain very manageable and I was off pain meds after about 10 days. So if he should decide to go with Dr. Russo tell him open is no big deal. At least it wasn't for me.

Thank you. He may meet with

Thank you. He may meet with him again to ask a few more questions.  I just want him to be sure he has the best surgeon and is comfortable with his decision.

Pittston

Pandabear1011 said:

I had my right kidney removed

I had my right kidney removed in May 2014. My tumor was 6cm x 4.5cm x 3.5 cm grade 2. That was over 3 years ago and I'm still cancer free and doing great. I was 48 when diagnosed and I recovered from the nephrectomy quickly. Good luck to your son.

 

Thank you. Wishing you all

Thank you. Wishing you all the best. Glad you are doing well.

Pittston

APny said:

He could always ask for a

He could always ask for a surgeon at MSK who does robotic if that's the way he wants to go. Ultimately it's his decision and most likely whatever route he takes will work out just fine. My open surgery was no worse than robotic/lap ones I'm reading about on this forum. Monday morning surgery, that evening walking around the ward, home Wednesday and doing work at my computer Thursday morning. Small incision since Dr. Russo is a rockstar Pain very manageable and I was off pain meds after about 10 days. So if he should decide to go with Dr. Russo tell him open is no big deal. At least it wasn't for me.

Decided to have surgery at

Decided to have surgery at end of August at MSK with Dr. Russo. 

Hoping and praying for the best.

Thank you for your help.

APny

Pittston said:

Decided to have surgery at

Decided to have surgery at end of August at MSK with Dr. Russo. 

Hoping and praying for the best.

Thank you for your help.

He will be in the best hands!

He will be in the best hands! Keeping you and him in my thoughts. Please keep us informed how everything is going. Hugs!

Pittston

APny said:

He will be in the best hands!

He will be in the best hands! Keeping you and him in my thoughts. Please keep us informed how everything is going. Hugs!

Thank you, very much. I will

Thank you, very much. I will update you.