Newly diagnosed, questions about surgery

HLee

Daniel

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.

a_oaklee

jroco said:

Daniel, also join the

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.

Jroco

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

jroco

A_oaklee, I agree but you

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

So glad you found us, Daniel

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

Back from surgery

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.

 

eug91

NICE JOB!

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!

 

APny

DanielQ said:

Back from surgery

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.

 

So glad it's behind you. I

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. 

DanielQ

Blood in urine

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

Daniel, I fully understand your anxiety

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.

 

APny

Let us know what doc says. I

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

APny said:

Let us know what doc says. I

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.

Thanks APny. You have always

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...

 

DanielQ

thingone said:

Daniel, I fully understand your anxiety

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.

 

Thanks thingone. Your

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...

a_oaklee

Glad its done.

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

a_oaklee said:

Glad its done.

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.  

Thank you for the suggestions

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

That's great that it's

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

Pace yourself

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

a_oaklee said:

Pace yourself

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.

Thanks a_oaklee. Somehow I

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  

DanielQ

Jan4you said:

So glad you found us, Daniel

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

Jan

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

 

Manufred

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

Manufred said:

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

Thanks Fred. I have been

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