12 days post op on Open Partial Nephrectomy

KEW001
KEW001 Member Posts: 3
in Kidney Cancer #1

Hi Everyone, 

I had a partial nephrectomy on 11/6/2014.  I had a hysterectomy in 5/2013 and this surgery resulted in an incisional hernia at the umbilicus.  I had a CT to confirm and locate the hernia and was told that incidential finding was a 3.0 cm mass on my right kideny, which suspicious for cancer, thus the open nephrectomy.  I also went ahead and had the hernia repaired at the same time to avoid having to do this in the future.   Now I have been through some surgeries, but I gotta say, this was a WHOPPER.  This was by far the worst and I have had 5 prior surgeries!   My scar is about 10 inches and is stlll pretty painful and on my right side, just below my ribs. 

The path report states clear margins and there is no eveidence of mets (which sounds pretty common from these boards).   My urologist is saying less than 10% chance of recurrence, but I get the impression from these postings that this may not be accurate.  What say everyone?   Have you been told differently?  My urologist says I need an ultrasound every 6 months and a CT once a year. Is this pretty standard?

Also, can someone give me some insight on length of time before I feel "normal", two months? 6 months?  I have some pain, not a lot but I do notice that I get tired very easily and need pain meds daily (Aleve).  My leave time is 8 weeks and my job is not physically demanding (I am a RN -patient educator).   

Strangely, I am not in a panic about a cancer diagnosis and surgery.  I just want real questions answered by people who have been there.  I feel that my urologist down plays a lot of my concerns and questions.  

Thanks in advance!

 

Comments

  • foroughsh
    foroughsh Member Posts: 779 Member
    #2
    Hi
    This link might help

    Hi

    This link might help you

    https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

    Forough

     

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #3
    KEW001, welcome.  At 12 days

    KEW001, welcome.  At 12 days out, there still should be some pain/tenderness/sensitivity near your incision. I stayed home from work (desk job) 2-3 weeks after the surgery, and the first week I went back, I only worked 4-5 hours per day, as sitting upright at the desk was not completely comfortable.  It is great that you have 8 weeks of leave.  As far as feeling "normal", I think that may depend more on you than on other's experiences.  One thing my doctor stressed, and I followed, was to walk after surgery.  I started walking 4 days after surgery, and I was walking 6 miles per day.  Doing this and drinking a lot of water helped my recover tremendously.  3 1/2 weeks after the surgery, I was swimming again.  But as far as feeling "normal", I could not go back to jogging/running until 2 to 2 1/2 months after my surgery. 

    During my recovery, I had a minor setback when I sneezed too hard and caused some sort of muscle pull near my rib cage on the side of my wound. The pain and discomfort from this took longer to go away than my incision.  I am now 4 months post surgery, and I feel I am 95% back to normal.  One thing I noticed is that for exercising, I do not have the same stamina I had pre-surgery, but I expect that will come back with time.

    As far as your chances of recurrence, you doctor is your best guide.  It all depends on the tumor grading scale.  No margins and no mets is great! Don't read too much into other people's experience here.  Everyone here is wonderful and will provide you great insight and advice, but every one of us is different in some way.  There can be a lot of confusing information, such as the stage of cancer and the grading scale of the tumor. 

    I am not sure of the standard protocol on post operation scans.  I have the same question. I go back for my first scans January 5.

  • Karen0074
    Karen0074 Member Posts: 64
    #4
    Positive_Mental_Attitude said:

    KEW001, welcome.  At 12 days

    KEW001, welcome.  At 12 days out, there still should be some pain/tenderness/sensitivity near your incision. I stayed home from work (desk job) 2-3 weeks after the surgery, and the first week I went back, I only worked 4-5 hours per day, as sitting upright at the desk was not completely comfortable.  It is great that you have 8 weeks of leave.  As far as feeling "normal", I think that may depend more on you than on other's experiences.  One thing my doctor stressed, and I followed, was to walk after surgery.  I started walking 4 days after surgery, and I was walking 6 miles per day.  Doing this and drinking a lot of water helped my recover tremendously.  3 1/2 weeks after the surgery, I was swimming again.  But as far as feeling "normal", I could not go back to jogging/running until 2 to 2 1/2 months after my surgery. 

    During my recovery, I had a minor setback when I sneezed too hard and caused some sort of muscle pull near my rib cage on the side of my wound. The pain and discomfort from this took longer to go away than my incision.  I am now 4 months post surgery, and I feel I am 95% back to normal.  One thing I noticed is that for exercising, I do not have the same stamina I had pre-surgery, but I expect that will come back with time.

    As far as your chances of recurrence, you doctor is your best guide.  It all depends on the tumor grading scale.  No margins and no mets is great! Don't read too much into other people's experience here.  Everyone here is wonderful and will provide you great insight and advice, but every one of us is different in some way.  There can be a lot of confusing information, such as the stage of cancer and the grading scale of the tumor. 

    I am not sure of the standard protocol on post operation scans.  I have the same question. I go back for my first scans January 5.

    Hope you feel better soon...

    i think the first three weeks after op were the worst, after this every day seemed to get better. I had a lap partial so recovery was a lot quicker than open. Don't push yourself, rest up and before you know it you will feel your new normal xx

  • APny
    APny Member Posts: 1,995 Member
    #5
    Karen0074 said:

    Hope you feel better soon...

    i think the first three weeks after op were the worst, after this every day seemed to get better. I had a lap partial so recovery was a lot quicker than open. Don't push yourself, rest up and before you know it you will feel your new normal xx

    Feel Better!

    I had the same surgeon as Positive_Mental and yes, I too walked my butt off, starting the evening of my surgery when they kicked me out of bed. That and lots of water did help in the recovery. Fortunately mine was pretty easy, considering that it was open surgery. I think I was told I have a 5 % chance of it recurring in the kidney and 10 % chance it’ll recur elsewhere (mets). There are no guarantees and statistics simply describe the average but hopefully we’re in the lucky 90 – 95 percent group. I also have US every six months along with chest x-ray and kidney function test.  

  • KEW001
    KEW001 Member Posts: 3
    #6
    Positive_Mental_Attitude said:

    KEW001, welcome.  At 12 days

    KEW001, welcome.  At 12 days out, there still should be some pain/tenderness/sensitivity near your incision. I stayed home from work (desk job) 2-3 weeks after the surgery, and the first week I went back, I only worked 4-5 hours per day, as sitting upright at the desk was not completely comfortable.  It is great that you have 8 weeks of leave.  As far as feeling "normal", I think that may depend more on you than on other's experiences.  One thing my doctor stressed, and I followed, was to walk after surgery.  I started walking 4 days after surgery, and I was walking 6 miles per day.  Doing this and drinking a lot of water helped my recover tremendously.  3 1/2 weeks after the surgery, I was swimming again.  But as far as feeling "normal", I could not go back to jogging/running until 2 to 2 1/2 months after my surgery. 

    During my recovery, I had a minor setback when I sneezed too hard and caused some sort of muscle pull near my rib cage on the side of my wound. The pain and discomfort from this took longer to go away than my incision.  I am now 4 months post surgery, and I feel I am 95% back to normal.  One thing I noticed is that for exercising, I do not have the same stamina I had pre-surgery, but I expect that will come back with time.

    As far as your chances of recurrence, you doctor is your best guide.  It all depends on the tumor grading scale.  No margins and no mets is great! Don't read too much into other people's experience here.  Everyone here is wonderful and will provide you great insight and advice, but every one of us is different in some way.  There can be a lot of confusing information, such as the stage of cancer and the grading scale of the tumor. 

    I am not sure of the standard protocol on post operation scans.  I have the same question. I go back for my first scans January 5.

    Thank you for your post

    Thank you for your post.  I would love to walk and am very mobile in the house, but we just had the big snow storm so outdoor walking scares me with all of the ice, snow and cold.  I have considered gym membership and am looking into this to keep up my mobility.  Strangely not too much tenderness, just some sharp sporadic pains at the excision site (kidney- upper pole), this is where I also had some pain prior to surgery. 

    Thanks for the insight about sneezing I will definitely splint my site until it heals. 

    Kim

  • APny
    APny Member Posts: 1,995 Member
    #7
    KEW001 said:

    Thank you for your post

    Thank you for your post.  I would love to walk and am very mobile in the house, but we just had the big snow storm so outdoor walking scares me with all of the ice, snow and cold.  I have considered gym membership and am looking into this to keep up my mobility.  Strangely not too much tenderness, just some sharp sporadic pains at the excision site (kidney- upper pole), this is where I also had some pain prior to surgery. 

    Thanks for the insight about sneezing I will definitely splint my site until it heals. 

    Kim

    My surgery was in March so at

    My surgery was in March so at first I walked indoors only. Just around my house, every hour for 5 - 10 minutes.

  • nsb748
    nsb748 Member Posts: 89
    #8
    APny said:

    My surgery was in March so at

    My surgery was in March so at first I walked indoors only. Just around my house, every hour for 5 - 10 minutes.

    Definitely be careful walking

    Definitely be careful walking outside in this weather. 

    I slipped about two weeks after mine.  I didn't fall, but I thought for sure I was going to split open like a hot dog.

    If I remember correctly, I started feeling exponentially each day after that first week and a half. 

    Keep walking around, do some gentle stretching, and drink lots of water.  I prefer lemon water, and supposedly lemon is a natural anti inflammatory

    You'll be good as new in no time. 

  • rainsandpours
    rainsandpours Member Posts: 136
    #9
    nsb748 said:

    Definitely be careful walking

    Definitely be careful walking outside in this weather. 

    I slipped about two weeks after mine.  I didn't fall, but I thought for sure I was going to split open like a hot dog.

    If I remember correctly, I started feeling exponentially each day after that first week and a half. 

    Keep walking around, do some gentle stretching, and drink lots of water.  I prefer lemon water, and supposedly lemon is a natural anti inflammatory

    You'll be good as new in no time. 

    I've basically repressed the

    I've basically repressed the memory of my recovery as it was traumatic.  But about day 12 or so, I was more mobile and didn't yelp when I moved.  Even 13 months out I still get the occasional pain or cramp near my incision.  The way you're feeling is normal.  Take your pain meds when you're uncomfortable.

     

    For followup:  I only see my Uro every 8 or 9months.  I had my first check up in July (but CT was end of May), and I don't see him until April or so again.  Your schedule sounds good actually.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #10
    rainsandpours said:

    I've basically repressed the

    I've basically repressed the memory of my recovery as it was traumatic.  But about day 12 or so, I was more mobile and didn't yelp when I moved.  Even 13 months out I still get the occasional pain or cramp near my incision.  The way you're feeling is normal.  Take your pain meds when you're uncomfortable.

     

    For followup:  I only see my Uro every 8 or 9months.  I had my first check up in July (but CT was end of May), and I don't see him until April or so again.  Your schedule sounds good actually.

    GaryM had the answer

    walk. drink lots of water. thats all. Your tumor was small. You may not have any change in your kidney functions so recovery from that can be just a few weeks. Recovering from the incision is another story. Comfort may be a couple few months or even longer. Depends. Are you athletically active? Run? Golf? or are you sedentary and a smoker? Have you forgotten your med/surg nursing? Not too many people breeze through their recovery. Be patient.We've all healed. You have to put in your time. You may to to re-ask about getting back to normal in a couple months. It is still early.

  • rainsandpours
    rainsandpours Member Posts: 136
    #11
    foxhd said:

    GaryM had the answer

    walk. drink lots of water. thats all. Your tumor was small. You may not have any change in your kidney functions so recovery from that can be just a few weeks. Recovering from the incision is another story. Comfort may be a couple few months or even longer. Depends. Are you athletically active? Run? Golf? or are you sedentary and a smoker? Have you forgotten your med/surg nursing? Not too many people breeze through their recovery. Be patient.We've all healed. You have to put in your time. You may to to re-ask about getting back to normal in a couple months. It is still early.

    For what it's worth, I didn't

    For what it's worth, I didn't go back to work until Mid Feb.  My surgery was Oct 15th last year.  I was still healing and fatigued.  I think I should have stayed off.  Ended up on med leave again end of Aug, then returned to work on Oct 6th.  Only to be out again Nov 4th.  Off indefinitely now.

    Don't' rush your recovery.  Let the internal stitches heal and get your strength back.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #12
    rainsandpours said:

    For what it's worth, I didn't

    For what it's worth, I didn't go back to work until Mid Feb.  My surgery was Oct 15th last year.  I was still healing and fatigued.  I think I should have stayed off.  Ended up on med leave again end of Aug, then returned to work on Oct 6th.  Only to be out again Nov 4th.  Off indefinitely now.

    Don't' rush your recovery.  Let the internal stitches heal and get your strength back.

    It will get better

    After 12 days you will start to feel better each day with maybe a bad day in between. Your recovery also has a lot to do with your age and health.

    The next few weeks should feel a lot better than those first few days. Sorry my coucin the weatherman fouled up your outside walking for a short while. All    kidding aside you should feel "normal " by about 6 weeks, but the heavier stuff like tthat big roller coater ride are going to have to wait at least a year.

    At 3.0 cm your prognosis is excellent for an absence of further Kidney Cancer issues.

    Do however discuss at least with your GP whether you need to address any Kidney Function issues which most often means watch your blood pressure, diet and general health.

     

    Icemantoo

  • KEW001
    KEW001 Member Posts: 3
    #13
    rainsandpours said:

    For what it's worth, I didn't

    For what it's worth, I didn't go back to work until Mid Feb.  My surgery was Oct 15th last year.  I was still healing and fatigued.  I think I should have stayed off.  Ended up on med leave again end of Aug, then returned to work on Oct 6th.  Only to be out again Nov 4th.  Off indefinitely now.

    Don't' rush your recovery.  Let the internal stitches heal and get your strength back.

    Thanks

    I have been walking, but get really fatigued easily.   Incredibly sore after walking.  My tumor was at the top of my kidney and according to my doctor near the vena cava.  He said that it was difficult to get to and maybe that is why the pain is still present, especially after I walk.  It has been 4 weeks and I went to do a little (and I really mean a little) shopping.  That was yesterday and I am wiped out today.  I will take your advise and still get plenty of rest.

     

    Kim

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #14
    KEW001 said:

    Thanks

    I have been walking, but get really fatigued easily.   Incredibly sore after walking.  My tumor was at the top of my kidney and according to my doctor near the vena cava.  He said that it was difficult to get to and maybe that is why the pain is still present, especially after I walk.  It has been 4 weeks and I went to do a little (and I really mean a little) shopping.  That was yesterday and I am wiped out today.  I will take your advise and still get plenty of rest.

     

    Kim

    Shop till you drop

    Kim,

     

    Just kidding. You are only 4 weeks out of surgery and there are still going to be some tough days.

    Let your body tell you when you have had enough for the day. This is not a Marathon. You just had major surgery. You will feel better.

    As a result of Partszheimers I do not remember any pain after my surgery 12 years ago.

     

    Icemantoo

  • APny
    APny Member Posts: 1,995 Member
    #15
    icemantoo said:

    Shop till you drop

    Kim,

     

    Just kidding. You are only 4 weeks out of surgery and there are still going to be some tough days.

    Let your body tell you when you have had enough for the day. This is not a Marathon. You just had major surgery. You will feel better.

    As a result of Partszheimers I do not remember any pain after my surgery 12 years ago.

     

    Icemantoo

    Use a pillow when you walk if

    Use a pillow when you walk if you still have pain. Hold it gently against the incision. That's what I did.

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