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Newly diagnosed, questions about surgery

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Hello to everyone,

I was newly diagnosed with RCC, at a relatively young age (20s). Being a "never-sick" guy, I was initally very shocked and depressed, but now I have come out from the shadow and will fight it with a positive attitude. I am glad to find such a supporting forum at CSN for kidney cancer, and hopefully I will be around at this forum for a long long time from now :) 

Briefly about my case, my tumor is 1 x 1.2cm, incidentally found from an ultrasound at a comprehensive physical. No symptoms (yet). CT highly suggests RCC. I immediately saw Dr. Russo at MSK and will do my surgery next week. 

I've never done any surgery in my life, not even dental fillings, so honestly I am rather nervous about my first surgery, especially an open surgery. Dr. Russo is certainly one of the best and I trust his skills with no doubt -- and I know he is famous here too. But Dr. Russo only does open surgery. Does this mean more pain and more life-time side effects compared to laparoscopic/robotic one? 

I am not too worried about any short-term difference, as resting for 2 weeks vs. for 4 weeks make little difference to me. But given a much bigger and deeper incision, I am more concerned about long-term or life-time side effects from an open surgery, such as muscle pain/sore forever, or losing the option to do other abdominal surgeries. 

Can anyone here with open surgery help me with my concerns? Will open surgery be an overkill for a small tumor at an easy location?

Thank you!

Daniel

a_oaklee
Posts: 441
Joined: Nov 2013

Sorry that you got this diagnosis.  I am a huge believer in second opinions.  However, you have a well known dr and hospital, so you should be in good hands.  Can you explain why you have to have sn open surgery.  Im very surprised at that.  What has Dr. Russo explained to you re this choice?  If you dont mind sharing info.  

My husband (65 strong and healthy), had an open surgery and the entire kidney was removed.  It was necessary as his tumor was growing into the vena cava.  An open surgery takes longer to recover.   It was about 6 weeks before he went back to work, and then it was half days for awhile.  His situation was much different than yours, so probably shouldnt do any comparisons.

Is your surgeon only removing the tumor, and sparing as much of the kidney as possible?   I hope so.

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thank you a_oaklee. Dr. Russo only does open surgery for all his patients. He can see things and control situations better at an open surgery. He also mentioned that robotic surgery has higher risk of spreading the cancer cell so in long term he thinks open surgery is still the first choice. 

And yes, that will be a partial nephrectomy to save my infected kidney. Hopefully my kidney function can be kept too. 

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Mine  was Lapo 17 years ago when rhat was the new thing. Now they have Robotic. Dr. Russo perfected his skills before there were the others. Open is actually preferred by some Dr's as they can get a better view of other stuff. I am sure oihers will reply includung some of Dr. Russo's patients. There is no one right  or wrong answer.

 

icemantoo

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thanks icemantoo. I know there are several patients of Dr. Russo's on this forum. Probably they will share me with some of their experience too. 

eug91's picture
eug91
Posts: 156
Joined: Jan 2019

I don't have any advice for you (my neph was robotic), but I wanted to welcome you to the boards. Sorry you had to join us, but these forums are terrific. We know what you're going through and we're here for you if you have any questions or concerns or if you just want to rant. 

I also never had surgery ever before my nephrectomy and yes the prospect of facing it is scary. But you've clearly got a great positive attitude - trust in your doctors and nurses and you will be fine. We all went through it so we know you're gonna make it through, too. 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thanks Eug. I've got many useful advices from this club and feel less scared now. I will face my surgery with my best attitude. I will keep posting about my journey here. 

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Daniel,

My surgeon had the same attitude - open cut so he can see what he was doing and what was there.   I was happy with that.  Recovery takes a few weeks but so what.  The scar is just a scar.

But I got metastasis a few years later anyway, so not as though open-cut stopped it spreading (or it had already happended - who knows?).

So, no-one really knows.  Stay vigilant after surgery so that if mRCC develops, it can be dealt with promptly - there are now many treatment options that can save your life.

Best Wishes, Fred 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thank you Fred. It now sounds less scary to me. 

I am very sorry to hear about the metastasis. I believe everything will turn out to be okay with you -- you have beaten it once and will beat it again :) 

Daniel

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Daniel,

 

I did beat the metastasis.  I am a poster-boy for immunotherapy - full details on my profile page.

You will be OK too, so hang in there.

Best Wishes, Fred

APny's picture
APny
Posts: 1949
Joined: Mar 2014

Daniel, I also had Dr. Russo do a partial nephrectomy. While not fun, and wouldn't want to do it again, it was not nearly as bad as I had feared. I had the surgery Monday morning, up walking that evening, home on Wednesday and doing work at my computer (at home) on Thursday. I was able to walk up the stairs and sleep in my own bed, no problem. I bought a recliner since so many people said I would not be able to sleep ok in bed but it wasn't needed. The pain was definitely manageable and I was off pain meds in about 10 days. Best advice, walk as soon as possible after surgery and keep walking. It was winter so I did laps around my house for 5 - 10 minutes every hour and drank tons of water. All the best to you. Dr. Russo is a rockstar! 

And look at it this way; one small (around 4 inches for me) incision instead of 5 small and one larger for laproscopic. 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Hi APny,

Thanks a lot. I am so glad to see another Russo patient here. I have read many of your posts too, and your story of fast recovery is really encouraging. I feel less scared now. 

I trust Dr. Russo too and am grateful to be in his hands. 

Might I ask how is the follow up with the tiny nodules in your lungs? I believe everything will turn out to be okay with you too. 

Best,

Daniel

APny's picture
APny
Posts: 1949
Joined: Mar 2014

Thank you for asking. After one year (last fall's CT) it was unchanged so I'm a bit less worried but I have another follow up CT in November so getting anxious again. 

I was absolutely terrified going into surgery, expecting to be a bed-ridden and pain-ridden mess for ages and it wasn't like that at all. After 5 weeks or so I was back on the treadmill twice a day. And I was a lot older than you. Given your youth and Dr. Russo's expertise I think you'll be amazed at your recovery. Just don't push yourself. 

A couple of suggestions here were terrific and I followed them. When you're ready to go home have a large garbage bag for the seat in the car. That way you can just swivel in without twisting your body. Also have a small pillow to cushion the incision against the seat belt. Buy a large body pillow and a wedge pillow for your bed at home. The body pillow was great support on the incision side. 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thank you for your advices. I just bought three pillows right after reading your reply :) 

Good luck for you upcoming followup. I believe it'll be another NED!

 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

Thank you, and good luck with the surgery!

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

I know exactly how you feel.  Although I was not diagnosed at such an early age, I was (am) a very active person.  Prior to diagnosis, I was training for a half marathon.  I like to think that being in such good health prior to surgery actually helped in my recovery.  Although it was not fun, it was not as bad as I thought it would be.  Since surgery, I've run in three more half marathons and continue to exercise as I did prior to surgery.  You'll be fine long term.

I do question the reason for not doing robotic surgery.  I'd love to read the research that supports this.  I'm no doctor, but there are several meta-analysis studies that summarize no significant long-term differences between the two.  I'm sure it comes down to the comfort of the doctor--which is most important.  In the big picture, it only matters that the cancer is out and does not return.

Good luck as you move forward.  If you have questions, we're more than happy to give you our opinion and advice (and support)

Stub

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Hi Stub,

Thank you. Yes, I totally agree that good health plays a key role in post surgery recovery. I also run and exercise regularly, but nowhere close to what you achieved -- 3 half marathons are amazing!! I do hope my prevous workouts can give me a shorter and less painful journey after my surgery. 

Regarding open vs. robotic surgery, the doctor doesn't think the long-term difference is significant, but he has his faith in open more than robotic. I think this varies from doctor to doctor. All I can do is to trust my doctor and his team. 

Thanks,

Daniel

Laura16
Posts: 3
Joined: Sep 2019

I dont care what they tell you!!!! I had surgery Oct 2013 and I have a ugly football buldge that can be seen a MILE AWAY!! If I had done it all over again I would have try robotic 1st, waited for results THEN been more aggressive.  Mine was 2.9. 

Laura16
Posts: 3
Joined: Sep 2019

:-)

jroco's picture
jroco
Posts: 23
Joined: Mar 2019

Daniel,

Wow for such a small tumor they sure are moving fast,  an open surgery in a week?  I would get a second opinion unless you can live with the after affects of the open surgery if it turns out to be benign. Maybe yours is just in a bad spot for robot? I dont know.  Dont get me wrong, I was in the same boat as you but i wasted my time on active survelience and during that time reaserched cryo freezing. Its my understanding benign or not the tumor could grow so you are doing the right thing getting it out. I went with the robotic and never looked back. Turned out to be cancer 1.2 CM on pathology.  Me and you are lucky we get to make these choices, alot are not able to make these choices. Good luck to you.

jroco's picture
jroco
Posts: 23
Joined: Mar 2019

Daniel, also join the facebook group    1-2-3 kidney cancer patient support community and post your question for some more great feedback. Its a community for stages 1, 2 and 3  and is very very active right now.

a_oaklee
Posts: 441
Joined: Nov 2013

I think its too bad that Stage 4 people are excluded.  All the people I know have wonderful information to share.

HLee
Posts: 13
Joined: May 2018

My experience says don't be afraid of open surgery.  However I am not the best one to talk because i have a huge incision.  Pain was not an issue and recovery went well.  My word of caution is becareful of a hernia.

jroco's picture
jroco
Posts: 23
Joined: Mar 2019

A_oaklee, I agree but you know facebook. They even have a group just for people that were benign on pathology. Im guessing thats not a very active group. I gave him this info because its a very active group with alot of folks with generally smaller tumors and some in the 30 years old range.

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

So glad you found us, Daniel and are already feeling the benefits of this forum! It was here that I too came and was so supported. I also learned that for most, Kidney cancer is contained and the cancer eradicated with surgery. 

I have had a couple of surgeries, 1 open and 2 robatic laparascopic. Most surgeons are learning the laparascopic with robatic. Takes a lot of training, but I highly recommend it as the recovery and pain is much less. Little incisions, less than 1 inch, exceptfor the one where they bag and remove the kidney If it has to be removed. Given you are probably stage I and small tumor you should be getting a parital. 

BUT what they don't tell you, is about the they use this gas to pump UP your abdomen do they can SEE better. However, the PAIN from the trapped gas can be quite bothersome. They let out as much as they can, but some gas gets trapped typical in the shoulder area. i was told to talk and also to swing my arms around in circles to help get that gas to move. When you know its only from the gas, you can put up with that kind of pain. The incision were sore but for me, hardly painful.

I used ICEfor pain releif! No one tells you to use ice packs, but it reduces the swelling and lessens the pain. I hardly used any opiates after just a few days.

BTW they robatic/lap surgeons can SEE just fine if not better with the camera guiding them. Yes, if they need to explore more, or cannot reach the tumor, they can do an open incision. I have never heard that they had to for me, anyway.

Also, you cannot lift or even exercise for 30 days, per my surgeon. Even though you do start to feel much better, you don't want to open up those inside incisions, especially from the Kidney. After all, your body is trying to heal. 

I also wore a velcro wrap used for bad backs. It helped support those sore muscles so I could get UP, turn over and get out of bed. 

If you feel good with this surgeon, but I wonder if he's older and just never got training for robatic/lap surgery techniques. If it were me, Dan, I would seek out a surgeon that does lap/robatic technique as it is much easier on you.

Keep us informed. We're here for you all the way!

Hugs, Jan

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Wow, big thanks for so many helpful suggestions Jan! It seems I missed many helpful posts when I was doing my surgery -- why doesn't this forum have notifications for new replies? I wish I have read your post earlier. 

I went for open surgery as planned. I agree that lap surgery is likely a better choice in general. But given that my surgeon has extremely good reputation and skills, I decided to stay with him. If not because of his fame, I will go for lap for sure. 

Ice pack and velcro wrap are brilliant ideas. I am buying them now. About velcro wrap, can you share more details about how to use a wrap for my back? Because of the strong tightness, I cannot straighten up my back. I am suffering from backpain because I can only walk like I had kyphosis. Do you mean wraping my back tightly with a backwrap? 

Thank you,

Daniel

 
DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thank you so much everyone. I really appreciate all these helpful advices. 

I just did my surgery. It was an open partial nephrectomy, as planned. @APny is right, Dr. Russo is amazing and the surgery went very well. 

I start to feel better now. I feel light pain even when walking, and no pain with no movement. However, the strong tightness of my abdominal muscles is bothering me the most. I cannot straighten my back up as it's too tight. I can only walk like I have kyphosis. Will this go away quickly? 

Another thing bothering me is blood in urine. On the day when I was discharged from the hospital, my urine was almost as clean as usual, with no blood observable by eyes. But last night, I have pink urine again. And then today it's back to clean again. Called the hospital and waiting for response. How long will the blood in urine go away completely? Is it normal to be on/off?

Also my urine has much more bubbles than it had before surgery. Is this usual to see after nephrectomy? 

Thanks.

 
APny's picture
APny
Posts: 1949
Joined: Mar 2014

So glad it's behind you. I went home with a drain so that was tinged pink for quite a while. I would imagine if I didn't have the drain my urine would have been pinkish on and off. I did not have the tightness you describe but it's something to discuss. They put you in all kinds of weird positions for surgery so it could be the result of that or temporary nerve damage. 

eug91's picture
eug91
Posts: 156
Joined: Jan 2019

YOU DID IT! WELL DONE!

I'll leave it to others who've had partial nephs to address your questions, but in the meantime, congrats! Take it easy, listen to your body, and let your body heal at its own pace. And in addition to Jan's great advice about ice, I also recommend heat packs for shoulder soreness. 

Heal up soon!

 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thank you APny and Eug. 

The blood in urine still concerns me. Does increasing activities also increase the blood in urine?

Today I tried very hard to straighten up my back and also walked a lot more than before. However, the urine has obviously much more blood than before. I have contacted the doc office and will wait for reply tomorrow. 

thingone
Posts: 39
Joined: Feb 2019

Daniel,  I fully understand your anxiety as I just had a Da Vinci robotic partial nephrectomyperformed two weeks ago. My surgeon told me the blood in urine could last up to two weeks or so. I am very lucky as my pink urine stopped right before I was discharged, but I am still nevous whenever peeing. It is always helpful to listen to your body talking. Hope your doctor will help you out on this.

 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thanks thingone. Your recovery is really fast. Maybe my body is not yet ready for more activities. 

The doctor wants to see me today so I am going back to see him this afternoon. Fingers crossing...

APny's picture
APny
Posts: 1949
Joined: Mar 2014

Let us know what doc says. I also totally get your anxiety. It's probably perfectly normal but it's good you're on top of it.

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thanks APny. You have always been so kind and helpful :) 

The doctor wants to see me today so I am going back to see him this afternoon. Fingers crossing...

 
a_oaklee
Posts: 441
Joined: Nov 2013

Hey Daniel.  Congrats on being done with surgery and so glad you didnt have any complications.  I do think its normal to have pink urine off and on for a few days.  Id advise you to ask the doctor, and i did read that you are in the process of doing that.  I have 2 suggestions:

1.  Take a pain pill 20 to 30 minutes before you walk.  I think it will help you to stand up straighter if the discomfort is lessened.  Pain pills can help you recover faster.  Also, just because you will feel pretty good in a couple weeks, does not mean you should overdo it.  There is internal healing that takes time, and you dont want to end up with a hernia at the incision site.

2.  Make sure you have a file of your scan, operative report, lab work, and pathology report.  

Let us know what the doc says.  

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thank you for the suggestions a_oaklee. I have seen the doctor and it is likely due to increasing activities. Today I took shorter walks and my urine comes back to very clean. I feel so relieved. Now I should listen to my body more carefully and stop pushing myself too much. 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

That's great that it's clearing up and nothing serious. And yes, don't push yourself too much. Drink tons of water too!

a_oaklee
Posts: 441
Joined: Nov 2013

My husband has had 2 major surgeries due to RCC.  He would feel really great for 3 days and do alot....and then he would stay home in pajamas and in pain for the next 2 days.   3 steps forward and 2 back.  Even when he was exhausted from the targeted therapy, he was told to pace himself.  Its something he still struggles with.  The docs tried to get him to use a timer to help him stop doing a task.  Hes pretty amazing that he keeps working until a job is done, but that mindset has been very difficult for him these past few years.

The point of the story:  Pace yourself.  Slow and steady wins the race.

To anyone reading this, my hub is 8 years at Stage 4 and has no active disease.  Yeah.

Best wishes Daniel.  Im sure your recovery will be swift.  You do have youth on your side.

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thanks a_oaklee. Somehow I missed this reply. I totally agree. I was pushing myself too much. Everytime when I walked too much I paid the cost. Now I am very patient with my recovery and make sure I pace myself slowly and steadily as you say. 

Your husband has an amazing and encouraging story for beating Stage 4 RCC! I know it's tough and he must be very strong. I'm very happy for you and your husband :) 

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Daniel,

This is a good time to treat yourself to the occasional afternoon nap and only walk or whatever when you feel up to it. 

You will be OK in time, just give your body a chance to get its act back together.

How is the bulge in your side?  I have previously mentioned my new nickname of Blobby Guts; does that fit you as well?  Smnall price to pay, I reckon.

Best Wishes, Fred

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thanks Fred. I have been moving slowly and steadily. 

My incision looks good by now and no bulge so far -- but I am only less than 3 weeks out from surgery. Still have a long way to go and I will be careful to avoid that :) 

Magnoliahiker
Posts: 6
Joined: Oct 2019

Hi Daniel,  I'm new here too and hope you are recovering nicely and slowly.  My entire left kidney was removed 3 months ago.  The healing process has been slower than I would like Laughing ...of course.  I've had more trouble with regaining my cardio capacity than anything, but as all these kind people on here have told me...slow down and be patient.  It will return.  So I have no real advice for you other than that because I'm so new to it myself.  I just wanted to wish you well with your healing process and hope things are going as well as possible. 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thank you Magnoliahiker. Yup, as a patient, you have to be patient Laughing I also feel my enery level is still pretty low now. I feel it will take a while.

How are you doing now after 3 months? I hope you are back to your full cardio capacity now. 

 
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