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Newly diagnosed and upcoming surgery

Pittston
Posts: 26
Joined: Jun 2015

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's picture
icemantoo
Posts: 3243
Joined: Jan 2010

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
Posts: 26
Joined: Jun 2015

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

stub1969's picture
stub1969
Posts: 817
Joined: Jul 2016

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 

Pittston
Posts: 26
Joined: Jun 2015

Thank you. I will look into this.

APny's picture
APny
Posts: 1969
Joined: Mar 2014

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
Posts: 26
Joined: Jun 2015

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
Posts: 26
Joined: Jun 2015

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's picture
APny
Posts: 1969
Joined: Mar 2014

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
Posts: 26
Joined: Jun 2015

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's picture
APny
Posts: 1969
Joined: Mar 2014

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.

Pittston
Posts: 26
Joined: Jun 2015

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
Posts: 26
Joined: Jun 2015

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's picture
APny
Posts: 1969
Joined: Mar 2014

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

Pittston
Posts: 26
Joined: Jun 2015

Thank you, very much. I will update you.

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

We like to hear updates, so keep us informed. I'm wishing you all well

Pittston
Posts: 26
Joined: Jun 2015

I will update everyone. It is nerve wracking, as you all know. We are just trying to keep busy until August 28th, scheduled date of surgery. 

Thank you.

NephroMan's picture
NephroMan
Posts: 10
Joined: Aug 2017

Best of luck!

Pittston
Posts: 26
Joined: Jun 2015

Thank you. How are you feeling this week?

NephroMan's picture
NephroMan
Posts: 10
Joined: Aug 2017

each day is better

Pittston
Posts: 26
Joined: Jun 2015

Glad to hear. Wishing you all the best.

Tesla1
Posts: 46
Joined: Mar 2017

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. 

Pittston
Posts: 26
Joined: Jun 2015

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 

 

 

 

 

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

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
Posts: 26
Joined: Jun 2015

Thank you for giving us hope. All the best.

Pandabear1011
Posts: 123
Joined: Jun 2014

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
Posts: 26
Joined: Jun 2015

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

Jan4you's picture
Jan4you
Posts: 1324
Joined: Oct 2013

Well what a lucky guy your son is to have YOU as his mother!! Of course you want the best. 

I remember my surgeon told me about how he would decide between open vs laproscopic. I have had 4 abdominal surgeries, 2 lap, 2 open. Turns out my kidney had to be removed, even though the tumor was only 4cm, due to its position near a blood supply. I always believed that the cancer went WITH the kidney but to follow up with all monitoring appointments. 

So for me, I was glad to have a surgeon who could do both open and laproscopic. For me, it made a huge difference in healing and recovery time. But no ones tells you that for the surgeon to SEE, either open or lap, they pump up the abdomen with this gas that gets trapped inside cavity afterwards. This trapped gas hurts! Its not like the pain meds can reach a trapped gas. i use kept walking and moving my arm around in circles where it was trapped in the shoulder. After about 5 days it finally left!! Whew. 

I also used ICE over the incisions and a lumbar wrap to support those healing muscles> I even wore it to bed. Helps for getting uP from sitting or laying down. AND I would place dry ice packs inside the wrap to soothe the incisions.

He'll be okay. Get as much information and trust your doctor.

Healing hugs to you and your son,

Jan 

Pittston
Posts: 26
Joined: Jun 2015

Thank you. He will have open with Dr. Paul Russo at Memorial Sloan Kettering. We live nearby and my husband had surgery at MSK two years ago. I know that pain you mentioned to some degree. I had laproscopic surgery last winter to have my ovaries and tubes removed as a precaution, also at MSK. No cancer, thank God. But that referrred pain was memorable. 

I am glad you are doing so well and I really appreciate your kindess.

Pittston
Posts: 26
Joined: Jun 2015

Surgery was on Monday and got home last night. Surgeon felt it went very well, but awaiting pathology. Lots of pain, took painkillers in hopsital but  hated the feeling he had so trying to avoid them now and taking 400  mg. of Ibubrofen. Has Narco if he really needs it.  Walking today but tonight has a fever of 100. Took Tylenol and already going down. Anyone else deal with this?

APny's picture
APny
Posts: 1969
Joined: Mar 2014

Check on the Ibuprofen. I think Tylenol is better on the kidneys. That's all I take if I have any kind of pain. So glad it's over and that he's home. Some fever is expected. I think I had one around 100. But keep an eye on it so it doesn't go above it. I took pain killers for about 10 days. I felt that walking for 5 minutes every hour helped. I just walked around the house as it was winter. All the best to your son and you!

Pittston
Posts: 26
Joined: Jun 2015

Thank you. Fever went down last night. He walked twice this morning through the neighborhood. Looks good. Appreciate your help.

MFoster
Posts: 17
Joined: Sep 2017

Yes, take Tylenol bc it is processed via liver instead of kidney like ibuprofen. Hope things are better! Hoping for a good path report. 

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

I hated the pain meds but used them for sleep. Opioid constipation was no joke and forced me off them. If temp goes up call back the Surgeons office was told by our Dr to do that. Also,  I had bad night sweats from anesthesia and pain meds for 2 weeks or so post op. Hope he is resting easy...sending positive thoughts.

Pittston
Posts: 26
Joined: Jun 2015

Thank you. He is watching it. Im just worried about infection. I am amazed that he even was able to get home last night although it wasn't easy. He did walk today a few times in his neighborhood. Not sure if he overdid it.

NephroMan's picture
NephroMan
Posts: 10
Joined: Aug 2017

I had my open partial a week and a half ago. I am.a 43 year old and in shape. This knocked me on my butt. First 3 days are terrible. I walked 5 mikes two days ago so dont worry, it improves quickly if you can keep.off of.the narcotics. you need those intestines to wake up.

Pittston
Posts: 26
Joined: Jun 2015

Thank you. Glad you are doing so well.  All the best

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Specifically water.  Helps get things moving again AND keep those elevated temperatures at bay.  Hope things continue on a good path,

Donna~

Pittston
Posts: 26
Joined: Jun 2015

Thanks . He is walking and drinking water so feeling a little better each day.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

It gets better each day. All the best with the recovery process! 

bmickowski
Posts: 7
Joined: Sep 2017

Glad to hear such great things about Dr. Russo. We have a family member in Los Angeles recently diagnosed with a mass in kidney. His family is here in NY and familiar with MSK. we are waiting to hear plan of action but hope to have him come here for surgery

Pittston
Posts: 26
Joined: Jun 2015

So sorry to hear about your family member, but if he is coming to NY he should go to MSK.

I highly recommend Dr.Russo. 

My son and I just went out to lunch and his surgery was 8 days ago. Still sore, but only taking Tylenol when needed.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

MSK is a great place, but commuting and / or relocating 3000 miles is a tad tough on a body, physically and socially. Are there other extenuating circumstances that would make this a wiser situation than your loved one being treated by excellent folks closer to home? 

After my nephrectomy, what I wanted more than anything (after a competent surgeon and excellent follow-up care) was my own pillow in my own bed, with the (mostly) reassuring sounds and sights of my own home and neighborhood. If I was in California and my family decided to hustle me back to NY (or even the "Holy Land" of NJ)? Let's just say it might have gotten really ugly, really quickly Wink ! 

Not to mention, if the timing is to have surgery this autumn or this winter, the bulk of the ice your loved one would encounter while walking (a VERY necessary follow-up activity) in Los Angeles would be in a soft drink cup at Del Taco. Or maybe it would be fruit juice flavored and served on a stick at the local paletería.

Either way, all the best - !

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