Recovering from radical nephrectomy

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  • crissoid
    crissoid Member Posts: 6
    Anita J said:

    Hello, I gather, you are
    Hello, I gather, you are just recently home from hospital. I had my right kidney removed 6-29-09 and i was was 2 months shy of my 49th birthday. no history of cancer in family. was diagnosed with stage 3 RCC. urologist thought stage 1, but pathology came back stage 3 because cancer had begun to invade the sinus fat inside my kidney. had radical nephrectomy. no sign of cancer in ureter to bladder, no sign in renal artery and vein and no evidence of cancer in tissues and fat surrounding kidney. had 6 month scans done december 2009 and all clear, except a growth was found on my thyroid, but after a biopsy that came back negative. i go in, in a few weeks for a chest xray, blood work and another ultra sound on thyoid to make sure cyst is not growing. i feel good, still cycling and did 110 miles last week. incision still sore and i get phantom pains where incision and area where radical done. told by my urologist could occur up to 2 years. i see an oncologist for my checks. i wish you luck and a speedy recover itingle. it is a very scary time and not a day does not go by that i do not think of my cancer. i am told that eventually with time you think of it less and less.

    Scheduled surgery
    Good Morning I am scheduled to have my right kidney removed 6-29-10. I'm a mail carrier, I've carried for 22 years, I'm 43 years old It's so encouraging to hear the testimonies from so many that has went through the same thing. While I'm out of work that will give me a litte time to priorize things in my life. Has the result of the surgery made any one make any drastic changes or just merley adust?
  • crescent mei
    crescent mei Member Posts: 2
    1530jesup said:

    new kid on the block
    hello
    just signed up. I am on other kidney forums and felt the more the better. my name is the street address where I grew up in case there are any Bronxites here.
    August 27th '09 had my left kidney and 4 lymph nodes removed. 12 cm tumor - papillary rcc. going in the docs said there was a possibility that the spleen, part of the pancreas and possibly a section of the bowel were to be removed as well. happily none of that took place - "only" the kidney and lymph nodes. in the run up to the surgery they discovered mystery spots on the lung that still have not been defined yet they seem to be shrinking and while we are still monitoring them the consensus is they are the collection of 70+ years of living. I have this really gross incision down my abdomen that makes a left turn above my navel and heads towards my left hip. no more swimming bare chested (I am in southern Florida)...
    I had two CT scans and a Pet scan since the surgery and am scheduled for another CT in March. I went to Johns Hopkins after the surgery for a second opinion. like others here I was told that there is no follow up treatment once they got all the visible cancer out. I was offered a trial that I refused because at my age. I felt protecting the other kidney from possible damage without knowing if the drugs were effective - or if in fact I was receiving the drugs instead of a placebo - was not worth the side effects and putting my one kidney in jeopardy. the doc at Johns Hopkins told me I have a 75% chance of recurrence because the cancer was in the lymph nodes. I think it is also because papillary RCC is a different beast then clear cell.

    I got back to playing tennis three months after the surgery and am living a "normal" life with no change in diet or activities - except I nap more often. so I am in the watch and wait club. I now see an oncologist, a urologist, an internist, a thoracic surgeon and a cardiologist (another long story) all because of a back ache that I had in July that showed up as a mass on my abdomen after taking an MRI. back ache went away - and so did the kidney
    Love to hear from others on what they are doing. and glad to share if I can help anyone.
    be well, Rich

    DEPRESSED, CONFUSED.
    Hi. Glad to have found you though not for the usual reasons. My husband started having backache some time ago (a year I think) thinking it was the rattan reclining chair which was also tearing in some parts. It wasn't clear, he just felt uncomfortable. This year, he lost alot of weight because he had been dieting. Had glucose test done and was told it was very high. So he thought the gastric was connected to this.

    When he started feeling uncomfortable after eating, he was referred to the hospital. As you can guess, our worst nightmare began. A CT showed a 10cm growth in his left kidney that was partially covering the spleen and pancreas. Urologist took a long time with his words - I almost thought, going by his body language,that my hubby was not even going to make it out the door. He said that they would most likely have to take out the kidney, spleen (partial pancreas?). But he said the bigger problem was whether it was coming from the adreanal gland and also they might have to do a graft on the artery.

    Anyway, we will be getting the biopsy result this Fri. I remember him saying it was a stage 4. What does he base this on? Why are we doing a biopsy if his chances are so flat? I even remember him saying that if during the operation they see that the growth does not touch the spleen and the pancreas, then it'll be like striking a lottery and will be straightforward. I thought he could already tell from the CT scan with his negative prognosis and body language. I hope someone can explain this better. I find more comfort here than infront of the dr because there are things I just cannot bring myself to ask him, what more with my hubby sitting there in the same room. Pls help. I can't sleep and eat and I think I'll be sick soon.
  • crescent mei
    crescent mei Member Posts: 2

    Hello from Malaysia
    I am 40 and I just had an open radical nephrectomy done on my left kidney on the 9th April 2010. A renal carcinoma was found thorugh an Ultrasound by chance when I went in the hospital for my Gallstones problem.The radiographer checked my gallbladder and my kidney too. After a CT Scan, it is confirmed that I had a mass lesion which doesn't look good on the film. My Urologist said that the growth looks very suspicious and cancerous and the size was about 14cm. So an operation need to be done to remove my Gallbladder and my left kidney. After a bone scan and a CT scan, I thank God that the cancer cells has not spread but contained in my kidney.
    I can walk on the 5th day.I was discharged from the hospital on the 14th April (after 6 days). During the stay in the hospital, I was given a strong painkiller called Ultraset which has a lot of side effects such as vomitting and constipation. I have very little appetite and my diet at that time consists of liquid food.
    I was sent home but on the 20th April, I was re-admitted once again to the hospital but this time, I experienced severe pain in my somach (not my op wound) but bloating and pain.I was sent to the ER as my blood pressure dropped to 90/50...dangerous.An X-ray was done and the doc found out that there are alot of gases formed in my intestine. I was put on drip for 3 days and was asked to fast for that duration. You see, during my first op, my intestines and bowel has been moved and has caused my intestines to stick to each other during the course of my operation. The movement has caused the intestine not to expand and contract normally therefore causing the food and gases beng trapped in the intestine.
    After 5th day in the hospital, an X-ray show that my intestines has settled and went back to normal. Liquid diet was introduces and on the 6th day, I was given soft food. I was discharged on the 7th day and ate normally on the 9th day, Hallelujah...
    I went back to work after 7 days out from hospital. My op wound healed very well and I just bought an post operation binder to put around my stomach to support the muscles. I still feel some twitching of pain when I sneezed or cough. I can't lift anything heavy yet.
    My Church and my family were praying for me during the course of the episode. My spirit was up during the duration and I was very encouraged that God has given me a speedy recovery. Now I am living with 1 kidney and no gallbladder. The cancer did not spread but follow up with Oncologist will be done in 6 months time. God bless!

    ANOTHER HELLO FROM MALAYSIA
    Imagine my relief when I saw yr post after mine. May I have yr contact so that my husband can talk to you for some moral support? Thanks.
  • icemantoo
    icemantoo Member Posts: 3,359 Member
    crissoid said:

    Scheduled surgery
    Good Morning I am scheduled to have my right kidney removed 6-29-10. I'm a mail carrier, I've carried for 22 years, I'm 43 years old It's so encouraging to hear the testimonies from so many that has went through the same thing. While I'm out of work that will give me a litte time to priorize things in my life. Has the result of the surgery made any one make any drastic changes or just merley adust?

    The mail can wait
    Crissoid. Make sure you take sufficient time off to recover from the surgery , like 3 to 6 weeks. Unless the Camcer has spread there should be no changes in your lifestyle/ The fact that your surgery is not being done immeadiateky is a good sign in that regard. But do sit out the 4th of July weekend.
  • Beejay51
    Beejay51 Member Posts: 2
    NWKeith said:

    In the same boat
    Thanks Icemantoo for being a positive realist and my role model; tomorrow I'll have my left kidney removed along with its tumor. Evidently the tumor is too big for laproscopic, so it'll be the big slice, so my recovery will be longer; I'm 59 years old and to hear that you waterskied the next summer is great. Keep posting and take care everbody.

    I to had big slice
    I am 51 years young. I found out May 5th 2010 that I had rcc in my right kidney. The only symptom was about 2 months of low grade fever, every day. My CT scan showed a 13cm carcinoma of right kidney.I had surgery May 10th 2010. The surgeon said it was bigger than they thought. I still cant wear pants all day, due to swelling. I hope that goes away soon. I still have a little discomfort but it something I can deal with. I thank God, and my great doctors for taking such good care of me. It might come back, but for right now I am cancer free. I had stage 2 . Hope everything is going good for you, and that it will soon be behind you.
  • crissoid
    crissoid Member Posts: 6
    icemantoo said:

    The mail can wait
    Crissoid. Make sure you take sufficient time off to recover from the surgery , like 3 to 6 weeks. Unless the Camcer has spread there should be no changes in your lifestyle/ The fact that your surgery is not being done immeadiateky is a good sign in that regard. But do sit out the 4th of July weekend.

    It's done
    Greetings icemantoo and everyon on the board, the surgery was Tuesday and I just got home about 20 minutes ago. The tumor in up being larger the 7cm ofcourse don't know the details yet but will know soon. Lost a quite of bit of blood only needed 1pint thank God. The cut isn't all that bad the pain is decreasing but the numbness in my belly feels crazy! To God be all the glory all went well thanks for all the encouraging words on this forum you guys helped me more than you all will ever know.
  • icemantoo
    icemantoo Member Posts: 3,359 Member
    crissoid said:

    It's done
    Greetings icemantoo and everyon on the board, the surgery was Tuesday and I just got home about 20 minutes ago. The tumor in up being larger the 7cm ofcourse don't know the details yet but will know soon. Lost a quite of bit of blood only needed 1pint thank God. The cut isn't all that bad the pain is decreasing but the numbness in my belly feels crazy! To God be all the glory all went well thanks for all the encouraging words on this forum you guys helped me more than you all will ever know.

    On the road to recovery
    Crissold, now that the big part is over (the surgery) it is going to take 4 to 6 weeks to feel normal. It does get a little better everyday. Your body just had major surgery so relax .
  • NWKeith
    NWKeith Member Posts: 8
    icemantoo said:

    On the road to recovery
    Crissold, now that the big part is over (the surgery) it is going to take 4 to 6 weeks to feel normal. It does get a little better everyday. Your body just had major surgery so relax .

    On the other side of the mountain
    Thanks again icemantoo; I'm 6 weeks past my surgery, and life goes on. Certainly the removal of an organ is not to be underestimated in the total effect it has on your metabolism, not to mention the trauma to your insides. But we do heal. I'm grateful to be walking in the woods every morning, stopping to rest more than I used to. I'm now the old guy I used to blow by when I jogged. Humbling. I feel a bit anxious when I think of my next cat scan and tests that'll be end of August. What's to be will be. Meanwhile the little things I do, like the chopping and dicing of onions and bell peppers for my family this evening, seem to take on a special meaning. I like still contributing to whatever needs to be done. It was hard to be a patient.
  • icemantoo
    icemantoo Member Posts: 3,359 Member
    NWKeith said:

    On the other side of the mountain
    Thanks again icemantoo; I'm 6 weeks past my surgery, and life goes on. Certainly the removal of an organ is not to be underestimated in the total effect it has on your metabolism, not to mention the trauma to your insides. But we do heal. I'm grateful to be walking in the woods every morning, stopping to rest more than I used to. I'm now the old guy I used to blow by when I jogged. Humbling. I feel a bit anxious when I think of my next cat scan and tests that'll be end of August. What's to be will be. Meanwhile the little things I do, like the chopping and dicing of onions and bell peppers for my family this evening, seem to take on a special meaning. I like still contributing to whatever needs to be done. It was hard to be a patient.

    You guys are braver than I was
    It took me years to openly discus my Cancer with others let alone be on a discussion board trying to help the newcomers. This now is my therapy trying to give honest positive answers to those with similar experiences like mine. I like getting on these boards about smoking in restauants and bars and how I never smoked and the leading cause of Kidney Cancer is smoking. While these smoking idiots talk about losing their rights because they can't smoke in bars and that we are losing our freedom because Michigan where I live just banned smoking in restauants and bars. The smokers never seem to want to respond to my story only to talk about their selfish desire to pollute our air with various carcinogins and that those of us that do not want to enjoy their carcinigens have the freedom to not enter these restaurants and bars. If we really want to do something about Kidney Cancer and other Cancers for the next generation let us work to ban smoking across this country (Canada too, but they are ahead of us). OK so I went a little off tangent, but I care about the world I am leaving for my children and grandchildren.
  • eweber
    eweber Member Posts: 4
    i'm new also
    I also had the radical kidney removal in feburary. To this day i'm still uncomfortable. I'm also being told this is normal. I went back to work and had some issues and got very depressed. A dr. friend of mine sent me a video of the same procedure i went through... it was an eye opener and made really take a look at my recovery.

    Take it easy.. don't rush it... it is a very obtrusive surgery....

    i'm still sore in the stomach area.. the rib aches a little.. but i'm cancer free at this time and hopefully will continue to be...

    good luck..

    ps.. question.. has any of your drs said what over the counter pain medications you can use... i do get a headache occassionally...
  • crissoid
    crissoid Member Posts: 6
    icemantoo said:

    On the road to recovery
    Crissold, now that the big part is over (the surgery) it is going to take 4 to 6 weeks to feel normal. It does get a little better everyday. Your body just had major surgery so relax .

    Vacation
    I read that you told somone to plan a vacation so I too am taking that advice my travel agent is booking me a florida trip to the Holy Land Experience in Orlando, round about the fall. Thanks for Everything you are like the leader of the forum!!!!!!!!!!!!!!!!!!!!!!
  • glenivymom
    glenivymom Member Posts: 2
    eweber said:

    i'm new also
    I also had the radical kidney removal in feburary. To this day i'm still uncomfortable. I'm also being told this is normal. I went back to work and had some issues and got very depressed. A dr. friend of mine sent me a video of the same procedure i went through... it was an eye opener and made really take a look at my recovery.

    Take it easy.. don't rush it... it is a very obtrusive surgery....

    i'm still sore in the stomach area.. the rib aches a little.. but i'm cancer free at this time and hopefully will continue to be...

    good luck..

    ps.. question.. has any of your drs said what over the counter pain medications you can use... i do get a headache occassionally...

    over the counter pain medicine
    My very first time on the site....you can take tylenol,,,,,not motrin (ibuprofen) or any other NSAIDS.....have to look up the full list online.....but more than one doctor has told me to not take those due to only having one kidney now....
  • jazzykim
    jazzykim Member Posts: 3
    Nephrectomy
    Hi wendyleigh,
    Don't know if you still visit this site, but I had a radical nephrectomy this past March (2010) and was in the hospital on the 3rd of March and discharged on the 5th.
    I myself went back to work after two and a half weeks, but now looking back, should have taken the recommended time off.

    I had severe swelling when I arrived home, kept walking and moving around.
    I was beginning to have the swelling reduce a few weeks ago, then after a recent adjustment (chiro) have had more swelling and can feel lumpy matter/puffiness (assume scar tissue?) on my right side. I understand your feeling of worry as to whether this will return as I don't awake or sleep without that same worry.
    I had a 7 cm tumor in my right kidney and had to have it and of course the entire kidney removed through laparscopic surgery.

    How are you feeling now? When did the swelling go down, etc.
    Anyone reading this too who has similar or had similar symptoms (puffiness, swelling, pain, etc.) I would love your input as right now I am of course worried that it is something yet again.

    Wendy, you are not alone (hope you are feeling great now).
  • icemantoo
    icemantoo Member Posts: 3,359 Member
    jazzykim said:

    Nephrectomy
    Hi wendyleigh,
    Don't know if you still visit this site, but I had a radical nephrectomy this past March (2010) and was in the hospital on the 3rd of March and discharged on the 5th.
    I myself went back to work after two and a half weeks, but now looking back, should have taken the recommended time off.

    I had severe swelling when I arrived home, kept walking and moving around.
    I was beginning to have the swelling reduce a few weeks ago, then after a recent adjustment (chiro) have had more swelling and can feel lumpy matter/puffiness (assume scar tissue?) on my right side. I understand your feeling of worry as to whether this will return as I don't awake or sleep without that same worry.
    I had a 7 cm tumor in my right kidney and had to have it and of course the entire kidney removed through laparscopic surgery.

    How are you feeling now? When did the swelling go down, etc.
    Anyone reading this too who has similar or had similar symptoms (puffiness, swelling, pain, etc.) I would love your input as right now I am of course worried that it is something yet again.

    Wendy, you are not alone (hope you are feeling great now).

    A Nepherectomy is abdominal surgery not a procedure.
    As I have said to others a Nepherectomy is an operation not a procedure. Having been there and done that here are my thoughts from a 2.7 cm Laproscopic Nephectomy back in August, 2002.
    The swelling is not going to completely go down for up to a year. Two and one half weeks is too early to go back to work full time. With 3 months behind you , you should have most of your strength back. It is still going to take a few months to get all of your stamina back. My high point was almost 11 months after the surgery when I went water skining and stayed up for the whole run. I was 59 then and am not sure I can do that again with 67 approaching next week. Do what you can when you can as you are never going to get younger. My hope for everyone on this board is that Kidney Cancer is but a bump in the road and that we will all die 20, 30, 40 or 50 years from now of something else.
  • crissoid
    crissoid Member Posts: 6
    jazzykim said:

    Nephrectomy
    Hi wendyleigh,
    Don't know if you still visit this site, but I had a radical nephrectomy this past March (2010) and was in the hospital on the 3rd of March and discharged on the 5th.
    I myself went back to work after two and a half weeks, but now looking back, should have taken the recommended time off.

    I had severe swelling when I arrived home, kept walking and moving around.
    I was beginning to have the swelling reduce a few weeks ago, then after a recent adjustment (chiro) have had more swelling and can feel lumpy matter/puffiness (assume scar tissue?) on my right side. I understand your feeling of worry as to whether this will return as I don't awake or sleep without that same worry.
    I had a 7 cm tumor in my right kidney and had to have it and of course the entire kidney removed through laparscopic surgery.

    How are you feeling now? When did the swelling go down, etc.
    Anyone reading this too who has similar or had similar symptoms (puffiness, swelling, pain, etc.) I would love your input as right now I am of course worried that it is something yet again.

    Wendy, you are not alone (hope you are feeling great now).

    Easy
    I had my radical surgery on June 29th came home July 4th I go outside and walk around my building one or two times, that's it. the rest of the day I walk from my chaise lounge to the computer. I go for my first check up tomorrow, my sister won't let me do anything she is scared I will Keloid. So I'm a hostage in my own house, they don't want me bending, twisting, reaching over my head,too far or anything and that's my family with those restrictions, so jazzykim take it easy listen to icemantoo and others. I'm not getting a dime of income yet, but that's not even going to rush me back to work, as I was told the mail can wait! Our health is way more important than these jobs. So easy. okay. When I'm tired i take a nap. Try it boy it works.
  • icemantoo
    icemantoo Member Posts: 3,359 Member
    crissoid said:

    Easy
    I had my radical surgery on June 29th came home July 4th I go outside and walk around my building one or two times, that's it. the rest of the day I walk from my chaise lounge to the computer. I go for my first check up tomorrow, my sister won't let me do anything she is scared I will Keloid. So I'm a hostage in my own house, they don't want me bending, twisting, reaching over my head,too far or anything and that's my family with those restrictions, so jazzykim take it easy listen to icemantoo and others. I'm not getting a dime of income yet, but that's not even going to rush me back to work, as I was told the mail can wait! Our health is way more important than these jobs. So easy. okay. When I'm tired i take a nap. Try it boy it works.

    The mail can wait a little longer
    I hope as a result of your absence that they do not use your absence as an excuse to raise the postal rates.
  • crissoid
    crissoid Member Posts: 6
    icemantoo said:

    The mail can wait a little longer
    I hope as a result of your absence that they do not use your absence as an excuse to raise the postal rates.

    sorry
    I'm so sorry to say it but stamps will be hiking up to .46 in January I doubt i had any thing to do with it.lol I so agree though it SUCKS!! But the Great News is I went to the doctor today the tumor was 11cm but Cancer Free thank the Lord. The only thing my doctor said I can do is walk, He does'nt want me to ride, nor drive in a car. Let the inside of the incission heal he said. I go back Aug 30th for my check up to possibly go back to work, but i am planning my vacation for october. Thank you everyone on this forum. Having the internet helps keep back cabin fever. Icemantoo you are so encouraging may God bless you and your family. luv ya
  • garym
    garym Member Posts: 1,647
    crissoid said:

    sorry
    I'm so sorry to say it but stamps will be hiking up to .46 in January I doubt i had any thing to do with it.lol I so agree though it SUCKS!! But the Great News is I went to the doctor today the tumor was 11cm but Cancer Free thank the Lord. The only thing my doctor said I can do is walk, He does'nt want me to ride, nor drive in a car. Let the inside of the incission heal he said. I go back Aug 30th for my check up to possibly go back to work, but i am planning my vacation for october. Thank you everyone on this forum. Having the internet helps keep back cabin fever. Icemantoo you are so encouraging may God bless you and your family. luv ya

    Update
    Hi everybody, I visit the board often and don't comment much but felt it was time for an update. I'm 59 and never smoked, I'm 8 mos. post surgery (left side) and had my 6 mo. CT 2 mos. ago which was clear. My Dr. said there is a 10% chance the cancer will return, I see that as 90% that it won't. My cancer was found very early because of an accident I had on my motorcycle, a CT in the ER caught it. My condition and subsequent recovery was complicated by the injuries from the crash but my Dr.'s advice was to keep moving and try to do a little more each day. The day after I got home from the hospital following 2 surgeries I walked a mile, it took my 45 minutes, Ive walked nearly 1,000 miles since and never looked back. I just completed my first mini-triathalon with my cancer-surviving son at my side. Icemantoo, I live in Michigan as well and have been an avid water-skier my whole life, while broken bones kept me off the water this year I will be out there at 60, and I will walk my first survivor's walk in our local relay next month. As I read and re-read this board I am struck by a common thread we all seem to share, a positive attitude. Stay strong everyone and keep on fighting.
  • icemantoo
    icemantoo Member Posts: 3,359 Member
    garym said:

    Update
    Hi everybody, I visit the board often and don't comment much but felt it was time for an update. I'm 59 and never smoked, I'm 8 mos. post surgery (left side) and had my 6 mo. CT 2 mos. ago which was clear. My Dr. said there is a 10% chance the cancer will return, I see that as 90% that it won't. My cancer was found very early because of an accident I had on my motorcycle, a CT in the ER caught it. My condition and subsequent recovery was complicated by the injuries from the crash but my Dr.'s advice was to keep moving and try to do a little more each day. The day after I got home from the hospital following 2 surgeries I walked a mile, it took my 45 minutes, Ive walked nearly 1,000 miles since and never looked back. I just completed my first mini-triathalon with my cancer-surviving son at my side. Icemantoo, I live in Michigan as well and have been an avid water-skier my whole life, while broken bones kept me off the water this year I will be out there at 60, and I will walk my first survivor's walk in our local relay next month. As I read and re-read this board I am struck by a common thread we all seem to share, a positive attitude. Stay strong everyone and keep on fighting.

    Right on GaryM
    I did not know of any 59 year old non smoking Kidney Cancers named Garry besides myself until now. I was 59 then, but am 67 now.It is nice to see the positive attitude is contagious. Our only difference is that I spell Garry with 2 r's.
  • garym
    garym Member Posts: 1,647
    icemantoo said:

    Right on GaryM
    I did not know of any 59 year old non smoking Kidney Cancers named Garry besides myself until now. I was 59 then, but am 67 now.It is nice to see the positive attitude is contagious. Our only difference is that I spell Garry with 2 r's.

    "rr"
    I don't suppose you ride a Ha"rr"ley too do ya? Seriously though, you take the lead on this board when it comes to being positive and providing encouraging feedback, its nice for us newbies to hear from someone that has survived and is doing so well years down the road. Thank you and keep up the good work!!