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Open partial nephrectomy

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Hi everyone!
It's been inspiring and encouraging to read all your posts, and to know that there is a life after cancer! I had an open partial nephrectomy on Sept 20th, where they removed a 4cm tumour, part of my left kidney, and the adrenal gland. My surgeon has taken off for a month so I have no info re follow-up or path details, only that everything went ok- so I'm left with no answers. Like so many of us, my diagnosis was incidental to another condition, and came as a bolt from the blue. One moment it's cancer, the next- you have no cancer! I'd only just gotten used to being told I had the rottenh thing, haha!

Has anyone still on the forum experienced an open partial? There are heaps of posts from radical lap patients, and I know you all have a particular set of concerns, but mine are a bit different. I have a 16" incision scar and half a kidney, which aches like blazes, day & night. I also have severe lumbar arthritis and am unable to take NSAIDS. I've been given Panadeine but can never get comfortable- even if I find a good position incision-wise I have to keep moving coz the arthritis pain becomes overwhelming. Does anyone else have this problem? Also, is there anything I could do about the scar which itches like crazy?

Apart from that, I feel stronger every day and know it will all get better with time- which, thank God, I now have!!!
All the best to you all xx

sylvan75
Posts: 30
Joined: Sep 2009

I had an open partial for a 3cm tumor on my right kidney, in Dec of 09. Had a great deal of pain but after about 2 weeks it started to subside. I spent the first 2 weeks after surgery sleeping (if you can call it that) on a reclining chair. After 2 weeks I had my staples removed and they but some kind of ointment on the scar and covered it with bandages, and I was told to let it stay and the bandages will eventually fall off, which they did, and thats when things really started feeling better. I didn't have much of an itching issue, but once you get your stitches or staples out you can probably use some sort of ointment to help ease the itching. As for follow up I had an MRI 4 months out and that was clean, and have another scheduled for this Nov.and that is pretty much the follow up procedure. I don't have a problem with lumbar arthritis, but you should try and walk as much as possible as this will help the healing process. It is now 10 months since my surgery and things are fine although I do have a problem but it is probably my fault. As I live in Pa. and we had a lot of snow in Jan and like an idiot I was shoveling snow a few weeks after my surgey which caused me to have a hernia where my surgery was done, and I have a huge bulge on my right side, which my urologist said will eventually have to be repaired and I am looking at some time in Dec. for this. In time you should be fine, just don't rush the healing process.

msdubya
Posts: 4
Joined: Sep 2010

I've had both a radical nephrectomy of the right kidney (Mar 2000) that took the kidney and glands surrounding it and part of the renal vein, and a partial nephrectomy of the left kidney (June 2003) that took out the middle of that kidney (from what I've been told). (For what it's worth, I've also had my cancerous prostate removed (Summer 2001) and a malignant melanoma removed from my abdomen (2001)).
The partial nephrectomy affected me more than the radical. I experienced more discomfort from the partial than any of the other surgeries. I bloated and felt sluggish for months. The surgeon also cut straight through my abdominal muscles which have now "folded" and are out of balance symmetrically with the other side of my abdomen. BUT, I'm still alive and have been cancer free now for over 7 years!
I'm here to tell you there is a light at the end of the tunnel. I agree that walking helps a lot in regaining your strength and breathing.
I had to sleep in my recliner for several weeks (or at least I thought I had to). Maybe that was in my mind only, but it did seem more relaxing there than lying flat in bed. I've had no chemo and followed up through MRIs for about 5 years. That's how they found the second kidney tumor.
Hang in there!

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Thank you, Msdubya- you have really been through a lot, and it's wonderful to hear you're 7yrs cancer-free! I'm guessing your radical was done laproscopically? Was your partial an open surgery? Open surgery is definitely a different ball game when it comes to recovery- it's only been 2 weeks for me, but any sudden movement still hurts like crazy and yet staying still is sometimes worse! The walking is good though, especially psychologically- it reminds you that your body is functioning properly despite what it's been through.
Thanks for your encouraging reply- it means a lot!

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

All the best to you, Sylvan75- I hope your recovery is going well. My incision area is a bit bumpy too, though not to the extent of yours. I guess that with the extreme invasiveness of the operation that we'll have to accept a certain amount of "difference" in our contours! I'm so looking forward to wearing waisted clothes this summer, but right now anything around the waist is too irritating so I look like a sausage on legs most days!
The itching is still a problem, but I've been told it's a sign of healing- whether it actually is or not, I'm trying to view it that way...
Cheers, Von

blackbelt's picture
blackbelt
Posts: 32
Joined: Apr 2006

I had a open partial nephrectomy on 5/17/2006 at the age of 51, renal cell carcinoma, clear cell type, Fuhrman grade 2, stage I, 1.2 cm right renal mass, with complications, doctors nicked right lung and nicked lower abdominal peritoneum area, this kind of surgery was high risk high return because of location of kidney tumor!
I had a open laparotomy(major abdominal surgery) on 12/01/2009 for small bowel obstruction/possible colon cancer?

I have had two different major abdominal surgeries, first 4 to 6 weeks start with no heavy lifting, just doing daily activities such as dressing, showering, driving, etc. I started walking immediately after each surgery in the hospital, I was in the gym the day after i got out of the hospital and just started walking, my philosophy is you're going to be in severe pain at home or the gym the quicker you get up and move around the quicker you heal, I waited until incision to heal before riding my mountain bike, I was riding stationary bike second week, elliptical machine second week, practicing my martial arts at 4 weeks, depending on your fitness level before surgery 3 to 6 months is all you need to get back to normal, remember normal is different now, yes you will have abdominal pain and possible fatigue and feeling tired, that is all part of the process of healing, remember abdominal surgery is no different than having knee surgery it takes 4 to 6 weeks for the surgery to heal, then it's up to you to keep your core abdominal stabilizer muscles strong.
GOOD LUCK

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Thanks so much for your comments, Blackbelt. I vaguely remember having core abdominal muscles (sometime around the 14th Century, perhaps) but after 4 children and previous abdominal surgery (perforated ulcer & peritonitis, very nasty) my musculature is not wonderful. It's been 4 weeks since the op, and I'm walking as much as possible but still in pain mainly around the incision.
I will email you later on to get some exercise ideas! I am a great believer in nutritional
therapies, and have been a lacto-vegetarian for nearly 20yrs. I have a cocktail each day with raw juice, calcium ascorbate, MSM, acai berries etc, and this has helped a lot with healing and also with the pain I think.
I'm a bit worried that working on my abs might cause some herniation, and I'd be left with an asymetrical bulge. This didn't happen to you, I'm guessing?
Cheers, Von

blackbelt's picture
blackbelt
Posts: 32
Joined: Apr 2006

To Von55 when you're walking you are working your core stabilizer abdominal muscles, when you get out of bed in the morning you are working your core stabilizer abdominal muscle, it's simple keep moving. It's been four years since I had my open partial and 10 months since I had my second open abdominal surgery and I still have pain around my different incisions, that's just part of the test God gave us , you can go to your doctor and complain for years about incision pain and yes your doctor will offer another surgery to go in and get rid of the scar tissue, there's only one problem another surgery could create more scar tissue and more pain and the risk of having surgery something could go wrong. You're not going to get a hernia if you don't do any heavy lifting, pain is not an excuse not to exercise. If you read my story I have had over 25 successful orthopedic surgeries in the past, I know a little bit about living with severe pain, and what to do before and after a major surgery. Yes I am also a vegetarian, alway been a vegetarian even before I lost 80 lbs in 2001, I am living proof you are what you eat. I would suggest put a ice pack on your incision area each day for a few minutes, it will help calm down inflammation around the surgery area. It will get better, keep up the good work, any questions please fill free to contact me.

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

Thank you all for sharing your stories...they are very encouraging. I am about to undergo an open partial nephrectomy next week and my nerves have been getting to me worrying about how long the recovery will be, whether I will be able to be as active as I am used to, etc... I'm glad to see people doing so well after even a few weeks post-op. My surgeon is telling me I will be out of work (I'm an attorney) for at least 3 months after surgery and I wasn't sure what to expect for those three months. I am hoping the pain is manageable and I will be able to follow Blackbelt's example and get my butt moving as soon as possible. They are making a side incision and not going through my abdomen which I hope makes the recovery and return to activity easier. It's never a good to find out you have cancer, but I feel very fortunate to have it discovered early and at a time when there is something that can be done to correct it. Wish me luck!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

lawmanmike,

You have come to the right place, this is a very supportive group. The wait between dx and surgery can be tough, keeping busy doing things like research, finishing projects that may have been put off, planning your recovery, and exercise will keep your mind busy and help hold the inner demons at bay. Three months sounds about right, but I'll bet you'll be back at least part time a bit sooner if all goes as expected. Getting moving as soon as you can is a good idea, but I wouldn't wait until after the surgery, increased exercise prior to surgery pays dividends post surgery even if its only for a few days. Post surgery, walking seems to be very beneficial in speeding recovery. This will all be behind you before you know it, but court-room drama will never be as important as it used to be.

Good luck and God speed,

Gary

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

I appreciate the feedback. Doing my best to stay focused and prepare for the surgery and the aftermath. And you are right - this changes the way I look at everything!

tom_in_VT
Posts: 25
Joined: Jan 2012

Mike
I'm 3 weeks out of the hospital, my incision looks like Flatlander's at the bottom of this thread - Pain meds are weening away and I feel generally OK. Washing a sink full of dishes wiped me out the other day but my stamina will come around! (or it's paper plates for me!!!) My goal b/4 surgery was 4 weeks out of work - maybe now 6 weeks is a bit more realistic. I think my best asset heading up to surgery was a positive attitude - I envisioned the surgery as 'minor' and would not let it get to me. My blood pressure in the prep area was 117/75 - I let my mind take me to another place and placed my fate in the hands (and training) of my surgeon. I kissed my wife and woke up ~6 hours later with a morphine pump hooked to my I.V. (Holy cow what a good idea, a morphine pump!) keep your spirits high, ask your surgeon questions, tell everyone in your life you are going to be fine & that you love them, get an Ipod and load up your favorite distractions for your hospital stay. As a friend I have had since grade school (~1969) told me, this is a speed bump, intended to get you focused on stuff that really matters.
Godspeed Mike!

Tom

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

Glad to hear you are doing so well Tom... This is my first night home from the hospital... I thought I was doing well but I'm a mess. Can't find a chair or bed or space to get comfortable. .. I'm In agony and think I am hallucinatIng. Family and friends have been amazing but now it's just me
And I can't figure this out. Doesn't even feel
Like my body any more

tom_in_VT
Posts: 25
Joined: Jan 2012

Mike,
Use as much of your pain meds as needed to get yourself zonked out, life will be a blur or should be a blur for a few days. The RN told me b/4 leaving the hospital, stay ahead of the pain. It was sound advice - "if your in pain, you are not healing" she said. Smart woman, I owe her big time! We got a recliner prior to my having surgery, it is my place to stay, I am for some reason able to get comfortable on it. My issue is my clock being backwards, I sleep in the recliner during the day and am unable to get much sleep at night, it drives me crazy. Stay strong Mike, the worst part is over, I know it may seem otherwise but it is. Use those meds my friend, get yourself numb, turn on some soothing music and float! Maybe a week of that (i know that seems like a long time) will put you on the mend. If you need more meds call your doc, they really are your life line in the short term.

Please Find Peace
Tom

tom_in_VT
Posts: 25
Joined: Jan 2012

Sorry, forgot to mention, stool softeners and/or laxatives with those pain meds or you will have another pain you will not like!

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Mike,
The first few days at home are the hardest. The sofa was my hangout for about a week. Make sure you walk around often. Did they give you something to take home with you to blow into as an exercise to maintain proper oxygen levels? Make sure you use it. I don't remember the drug I was using but it made me hallucinate also. I was seeing bugs crawling on the walls. I told the doctor and he changed the medication and I was okay after that. You'll improve daily and be much better in no time. After about 6 weeks, I was back to "normal" if that is the right word to use after a radical nephrectomy.
Regards,
Mike

augello55
Posts: 12
Joined: Mar 2013

I am 6 weeks post op   and sooo thankful that I found this website.  I laughed at your dishwashing comment because the same thing happened to me, so when I read your post to my husband he laughed...because who sleeps for almost 2 hrs after washing 12 dishes LOL   ahhh yes the morphine pump....they should allow you to come home with one for the first 2 weeks ha ha.  I was up and walking the day after surgery....I wanted out of the hospital ASAP.  and was sent home 3 days after surgery..however the muscle spasms I encounter on day 5, 6 and 7 were god awful and i thought for sure i was going back in.  my dr asked me about pain meds, which i was not taking on a regular basis because i didn't realize i was in pain...i was just really uncomfortable....boy did i learn...they give you those drugs for a reason ...duh...   I have had several surgeries over the years, and I had a hysterectomy just a little over 3 months prior to this surgery. I also exptected my recovery to be like those..ha ha...boy was I fooled.   I am FINALLY just starting to feel "normal"   last night was the first night in 6 weeks that I actually spent the entire night in my bed and slept most of it...over the past week i had tried several times only to last only a couple of hrs.  I too thought about 6 weeks out of surgery...i am hoping to back in the next 2, however realistcally i should be looking at another 4 weeks out of work.  

 

I do have one other (maybe 2) other questions    I have very little appetite (this is abnormal for me ha ha)  I literally force myself to eat most of the time (because i am diabetic)  popsicles and jello have become my best friends...i feel as if there is a really tight belt across the very top part of my stomach...and i feel like there is something in my side  (the length of my 15" scar)  almost like i can't bend over....i can't wait for that feeling to go away!!   did you experience any of that.   my dr says its all normal?

lerixon's picture
lerixon
Posts: 2
Joined: Apr 2012

Mike....I just found this sight and read your post. I am also having an open partial nephrectomy April 18th. I hope at this point, you are well on your way to recovery. This has been a scary discovery and I have worked myself into a bundle of nerves being online. I just wanted to make contact with others that understand this situation. As you, I feel fortunate it was found earlier rather than later. My doctor says it doesnt appear to have spread....and i pray that is truly the case. I hope all is well and you are feeling much better.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

lerixon,

Unfortunately Mike has decided to leave the board for awhile to work on a new book, we hope he returns, in his absence allow me to welcome you to the club. Hearing that you have cancer and you need surgery all in one breath is a very scary experience, here, you have found a supportive group of people that have all shared that experience and will help you through the process as needed. Fear, anxiety, and emotional ups and downs are all normal, and because things seem to happen very fast a sense that you have lost control is common as well. Found early and doesn't appear to have spread are two very positive things in your favor, the cure rate in cases like this is near 100%. The surgery and recovery are not fun, it will take longer to recover from an open procedure like you are having, but it is a small price to pay for what should be a very long life afterwards. It sometimes takes work, but maintaining a positive attitude through it all will serve you well, don't dread the surgery, think of it instead as the greatest gift you will ever receive, the gift of life. I'm sure you will be hearing from others along the way, we're here when and for whatever you need us.

One other thought, your post is kinda buried in the middle of this thread, you will likely get a better response from others here by starting a new topic or thread, its easy, there is a link at the top of the main page. It'll make you more visible.

Good luck and Godspeed,

Gary

Tyrandol
Posts: 2
Joined: Dec 2010

I too had an Open partial nephrectomy (oct 27th) to remove a 2cm tumor from My right kidney they would not have found except that I have sleep apnea that caused me to fall out of bed causing back and neck trama that they cat scanned and accidently found tumor .
I thought I had a surfer for a surgeon He walked in and looked at Me and I Quote "Dude You have Cancer" the only reason He did not get knocked out was the next words out of his mouth were "But We can fix that". But I also have degenertive arthitis in my lower spine and Neropathy in My hands and feet soo I understand finding a comfortable postion for Your incision and Ok now back or leg say You HAVE to move but Doctor put Me on 600mg of Tramadol per day and a lower dose of naproxin seems to help a little for now.
Hope this Helps You

Bklyngrl
Posts: 2
Joined: Aug 2011

I had my surgery July 14, 2011 to remove a 4 cm renal cancer mass found by accident. I'm grateful for the gift of life, the gift of family & friendship and the internet. So many of you are inspirational. Anyway, I'm feeling pretty good, considering its not quite 3 weeks post surgery. The stitches have mostly dissolved, the last 2 steri strips fell off yesterday, the scar doesn't look too bad except for the swelling above & below, I've had no real pain needing pain meds in a week and I'm able to walk a little further each day. Sleeping is a challenge at night as its difficult to get comfortable, though I'm a back sleeper. I can't stand too long in one place and I find myself constantly napping, which I suspect is part of the healing process. I take a walk, return home and sleep for an hour. What a life. A bit about me...although I am chronologically 63, I don't look it, feel it or act it. Physically very active before the surgery even though I was 15~20 lbs overweight (which I was addressing when the kidney mass was found), I hope to work myself into better shape when my body let's me know I can. I'm a vegetarian who tries not to let stress control my life in spite of its constance in it. I have two teen daughters, an elderly very sick mother who lives 200 miles away and an ex husband who is a divorce lawyer with whom I'm back in court over several issues. When I was being wheeled into the operating room and the surgeon saw me I told him he would find my ex husband's initials on the tumor. After he laughed he said he's heard that before. Anyway, I'm glad I'm retired except that finding money to pay all the myriad large co pays from this latest health challenge will be interesting.

icemantoo's picture
icemantoo
Posts: 1570
Joined: Jan 2010

Bklyngrl, Welcome to the club. Each day will get a little better, My little rascal came out measuring 4.2 cm on 8.1.2002.I was 59 then. The finances will get a little better when you become eligible for Medicare at age 65.

Best wishes,

Icemantoo

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Already off your pain meds? Good for you! You're doing better than I did! I was still on my pain meds right up to the 6 weeks mark.

All the napping is perfectly normal.

And even now, I can't stay in one position for too long, whether it's lying down or sitting in a chair. I'm 7 weeks post-op.

So I'd say you're doing great!

cucas87
Posts: 10
Joined: Dec 2011

My father has been diagnosed with kidney cancer and will be having an open partial nephrectomy on 1/18. I don't know much more, the tumor appears to be large (orange or grapefruit sized). My father lives by himself and I am out of town. I will be coming in a few days before the surgery, to help him get ready, clean the house, stock up on things he'll need afterward, etc., and I'll stay in town while he's in the hospital, but I wanted to ask your thoughts on whether/how long he might want me to stay with him once he's released to go home. His doctor said he will not need to hire a nurse for when he's home after the surgery, but what I can't really tell from your posts is how much help you needed afterward or whether you could really have handled things on your own. I know that this is a big surgery, and I want to do whatever I can to help him. I'm grateful to be able to talk with you all and learn from you.

Thanks.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi,
That is a hard question to answer as healing time can be very different for everyone. I had laproscopic surgery, which has a faster and easier healing time than open surgery, and I don't think I could have been on my own for the first three weeks. The ideal solution is that somebody is with him until he's ready to be on his own (or until he proves to you he's ready, in case he's too proud to admit he still needs help). That's going to be a judgment call somebody is going to have to make. I know I wouldn't want to be alone until I was up and about and had reasonable control of the pain.
Regards,
Mike

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Your father's age and current physical condition will also come into play. Those that are in reasonably good health and have exercised regularly pre-op seem to recover more rapidly than most others. For an open procedure recovery will take longer and even though he won't need round the clock nursing care he will probably need assistance in varying degrees for several weeks.

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Hi,
I just had an open partial on 12/6/11. I'm almost 5 weeks in now. I'm 56 years old and a very serious cyclist, so I was in really good shape before the operation. The first week or 2 are very difficult. Getting in and out of bed, showering, preparing food/eating, walking become major tasks and you can't lift anything. I don't know how I could have made it on my own for the first 2 weeks. I thank my wife every day for everything she does/has done for me.

Believe me, the first 2-3 weeks are tough. I'm feeling better everyday though, so he'll just need time. As Icemantoo says, there's no way to sugar coat the post-op period.
I hope your Dad has a speedy recovery.
--David

cucas87
Posts: 10
Joined: Dec 2011

Thanks for the good feedback. My father is 72, so I know that he will need time to recuperate. I will look into staying longer based on the comments you've made. I appreciate the good wishes for my father, and I send good wishes to everyone here.

dianabquilter4
Posts: 25
Joined: Jan 2009

i had mine in may of 2006... my tumor was located at the top of the kidney and was half in and half out of the kidney with the top sitting up agaisnt the lung. but ot was incased in the lining surrounding the kidney so it didnt get to spread..thank goodness..my incesion was on the side right under the ribs and ran from middle of tummy to middle of back. i did good expect for the pain when meds wore off...i was closed with skin glue but it itched so bad...i was told that removing the cancer was it either u had it or u didn't and when they took part of the kidney and glands they took the cancer and i was considered cancer free....i kept having ct and mris and nothing ever came of it the cancer didnt come back i am now considered cured as it will be 5 yrs in may...just enjoy life the best u can and try not to worry if it ddint spread before surgry chances are you are cured too...

dianabquilter4
Posts: 25
Joined: Jan 2009

i had mine in may of 2006... my tumor was located at the top of the kidney and was half in and half out of the kidney with the top sitting up agaisnt the lung. but ot was incased in the lining surrounding the kidney so it didnt get to spread..thank goodness..my incesion was on the side right under the ribs and ran from middle of tummy to middle of back. i did good expect for the pain when meds wore off...i was closed with skin glue but it itched so bad...i was told that removing the cancer was it either u had it or u didn't and when they took part of the kidney and glands they took the cancer and i was considered cancer free....i kept having ct and mris and nothing ever came of it the cancer didnt come back i am now considered cured as it will be 5 yrs in may...just enjoy life the best u can and try not to worry if it ddint spread before surgry chances are you are cured too...

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

As the MD goes through the list of possible complications and asks you to sign off on the procedure, I had some of those rare things happen. I hallucinated from pain meds and went with tylenol and Advil Most of the time. Then my kidney wouldnt stop leaking urine post tumor removal. They sent me home second time and my whole scare oozed urine so bad some stitches opened up. In the end it is finaly slowing. So about 24 days post sugery i am still peeing into a foley and putting about a liter of urine out my kidneys leak into a bag. You can see the Drain tube in my profile pic. My point is even at this point, I am better off with this MD because 90% of my kidney was saved. As I am 39 i may need it some day. Good.luck.

cucas87
Posts: 10
Joined: Dec 2011

Thank you all for sharing your experiences. My father's surgery is tomorrow. We are ready to go and thankful for the good advice and experiences of everyone here. Here's to good health and much happiness in this new year.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

cucas87,

I just wanted to say I'll be thinking of you and praying for good results for you and your dad tomorrow. In a few short weeks all of this will be behind you and life can return to "normal". Let us know how it turns out.

Good luck and Godspeed,

Gary

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

It will seem like minutes to him ... but an eternity for you. I was given something to "relax" me in pre-op and they wheeled me out to prep me. That's the last thing I remember. The surgery was over in no time for me, but for my wife it seemed like forever. Best of luck to the both of you.
Regards,
Mike

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

You and your father will be in my thoughts and prayers tomorrow... He is lucky to have you there for him... My surgery was last Thursday and I had a decent time in the hospital and was released Sunday then things got a little rough. Your father will need help with everything - keeping meds on track, help getting around, etc..., and there will definitely be ups and downs... But as my Doc said there's just no way around the hard work that follows the surgery. BUT I have never felt closer to my family and friends who have been there with me every step of the way! Good luck tomorrow, stay strong - and let us know how it goes and if you need anything!

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

You and your father will be in my thoughts and prayers tomorrow... He is lucky to have you there for him... My surgery was last Thursday and I had a decent time in the hospital and was released Sunday then things got a little rough. Your father will need help with everything - keeping meds on track, help getting around, etc..., and there will definitely be ups and downs... But as my Doc said there's just no way around the hard work that follows the surgery. BUT I have never felt closer to my family and friends who have been there with me every step of the way! Good luck tomorrow, stay strong - and let us know how it goes and if you need anything!

cucas87
Posts: 10
Joined: Dec 2011

A quick note to thank you for for your information, advice and wonderful support. My father's surgery went well and we're now in the recovery phase. He's still in the hospital and today, I think, will be a better indication of how he's really doing since he's off the pain medicine drip and on oral pain pills. There seem to be a few issues to resolve(not producing enough urine), but overall the doctors are very pleased. I know we have a way to go, but it's a relief to have the surgery in the past. I can't thank you all enough for your generosity in responding to my posts, and I'll continue sending my good thoughts and prayers to everyone here.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Great news - well done both of you! Now, plenty of fluids and make sure you keep on top of the pain. Things will get steadily better from about now on. Make sure you've got well set up for comfortable sleeping and resting places for when your father gets home.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Good to hear he came through the surgery just fine and ditto to what TW (The Fighting Scot) has said. He will improve daily from this point on.

cucas87
Posts: 10
Joined: Dec 2011

Thank you all for participating here. We are now 5 days post surgery. My father had a complication that his kidney would not stop leaking urine, so tonight they put in a stent. They said he will have the stent and the catheter for a number of weeks. While I am sorry to hear that others also suffered some complications, it has helped so much to read your experiences and to know we are not alone. I am grateful that my father came through the surgery and that by and large (easy for me to say), he is doing ok. I am looking forward to his being back at home, because the hospital is not an easy place to recover.

Good thoughts to everyone here.

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

My surgery was a month ago and just now my leaks are almost done. Its hard not to go crazy. I was readmitted a few times. Got a hospital acquired infection. The stent wasnt enough. They added other drains and I leaked through stiches etc. Anyways my point is it will get better. Tomorrow I go to have a drain pulled and maybe the foley. But #1 in my mind will be, I am alive.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I won't be the only one to be delighted to hear that you're moving in the right direction Flatlander. You sure haven't had to seek out your problems!! It's testimony to your own fortitude that you're coming through it all to an ever brighter future. Still it's no wonder you're doing ok with all the support you've got - now including the church that you didn't even know were part of your support network and praying for you. Keep on going and all will be fine.

cucas87
Posts: 10
Joined: Dec 2011

Flatlander,

I appreciate your honesty and attitude. It's probably because I had relative-in-the-hospital-brain last week that I didn't adequately express that. I'm glad to hear things are moving in the right direction, and of course I agree one hundred percent, that the best and most important point is that the cancer is gone. I'm sorry your adventures after surgery have been more "interesting" than you may have wished for, but I'm glad to read that you have so much support, including here. I look forward to hearing more about your adventures, and, hopefully, speedy recovery.

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

I myself was told I may have my stent pulled this week or next. I hope his stent worked and they didnt have to add second drain as they did on me. Keep us posted

cucas87
Posts: 10
Joined: Dec 2011

Flatlander, I'm so glad to hear that you won't need the stent much longer. That's wonderful news. And thanks for asking about my Dad. He's doing pretty well. He's been home for one week; he's now in the house by himself (I left a few days ago and my brother stayed until yesterday, but my Dad was interested in getting his house back!), just as he was prior to surgery. He hasn't taken any pain medicine since four days after the surgery. He's walking fine. The urine leakge, however, is continuing. While he was in the hospital, the medical team actually did a second stent procedure to reposition the stent, and in the week since he's been home he has continued to have significant -- although slightly decreasing -- drainage. Today my Dad was asked by the doctor to reduce the suction on the drain near the incision, to see if that will encourage the urine to flow out through the catheter (and not the drain). I know my Dad will be pleased when the drains and tubes are gone because then he'll really have his independence back. Also, he's working hard to recover because he will need to have a second surgery -- to remove a very large mass from his lung -- but that mass, miraculously is benign. The lung mass is twice as large as the kidney tumor (the doctors called it "huge"), so the fact that the overall news is good as to the kidney cancer is such a gift.

If you all don't mind reading a few words from a patient's daughter, I'll add that it's amazing how strong my Dad has been, and how strong everyone here is. I'm stunned that I knew so little about kidney cancer, and I will do my part to help increase awareness and I'll support all research into this sneaky disease. If any patient's family members are reading this post, please don't mind if I make 3 practical suggestions in addition to all of the good advice that everyone here has posted: (1) while your family member is in the hospital, do what you can to connect with the nursing staff in the hospital, as they are the (very overworked) prime caretakers and will appreciate your efforts -- and it will make it easier for you when you need to ask them for help -- and you will; (2) don't be afraid to speak up if you have questions or your family member needs help. My father had prostate cancer 11 years ago but did not have surgery for it (he had radiation), so this was his first real hospital stay. We had a lot of questions as to what was happening, why certain procedures were necessary, etc., and we simply asked as politely and in as straight-forward a manner as we could; and (3) as soon as your family member is eating solid food, talk to the doctors and find out what foods are ok and see if you can bring in food from the outside (home cooked or store bought) because it both helps in terms of normalizing things and in terms of appetite.

I'm sending good thoughts and many thanks to everyone here.

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

I'm so glad to hear your father is doing so well and is getting back to his independence! So soon off the meds is pretty impressive and I hope he continues to do well! Good luck to you both!

cucas87
Posts: 10
Joined: Dec 2011

How is everyone doing? I'm hoping that this is a good week for everyone. As for my family, we are almost a month out from the surgery and my father is feeling well, but still has the catheter and the drain. The doctor is concerned that the kidney is still leaking a fair amount of urine, so they are doing more bloodwork and will probably do a CT scan later this week. I know my father is frustrated and looking forward to getting rid of the tubes. We all are grateful that overall his recovery has gone so well. And grateful that they were able to spare his kidney, because if they had been unable to save the kidney, my father would likely be on dialysis at this point -- so I want you to know we are keeping perspective. And it is impressive to me is that the doctor is following up and closely monitoring his progress. That said, I'm keeping my fingers crossed that this issue will resolve and that the tubes will be removed without too many additional procedures (or additional anatomy lessons).

cucas87
Posts: 10
Joined: Dec 2011

I wanted to let everyone know that I still think of everyone here. I had some trouble logging in for a while, but wanted to get back in touch and send my own good wishes. As for my father, he continues to recovery from the surgery he had in January. He still has a drain from the kidney surgery (the catheter was removed about 4-6 weeks ago), but it looks like that will be removed soon. On Friday he will have another surgery to remove the large mass in his lung -- meaning he will have the surgery even though he still has the drain from the kidney surgery. All these weeks later I still recall how comforted I was in January by the good thoughts and helpful advice from everyone here. I send my best wishes to everyone.

tennesongr152
Posts: 1
Joined: Feb 2012

Hi Von,

Hope you get better completely. I read you experiences and really want to know what's your current status. I am doctor. Recently, I am doing an experiment by tracking the persons with surgery.

I am looking forward to your reply. Thanks!

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darknight
Posts: 3
Joined: Feb 2013

I am now 1 week post-op of a partial nephrectomy of my left kidney. It didn't hit me before the seriousness of the situation I'm in. I knew what I had, but was still shock. I kept saying, I'm only 25 and never had to undergo anything like this. Really? The C-word? Man did it opened my eyes. The pathology report came back and showed that they got it all. So I'm glad about that and there is a 99% chance of it not returning. I guess I'm just looking for a few answers, like everyone else. I'm still swollen and know I got a long way to go before I'm healed and able to get back out there. I just hope it is soon. I'm a paramedic student and had to put off my clinical rotation for this surgery and healing time. I just don't know how long it is going to be. And I am surious if anyone has had their tumor come back? That is my fear, to have to go through this again. I hate feeling helpless and can't do anything. I have never been down before, never the one to sit on my butt at home and hell, I have barely been sick in my life. So I guess this is why it is a little harder for me. Any help or support is greatly appreciated. Thanks in advance.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You've got your path report - can you share it with us?  Is - or rather, was - your RCC collecting duct variety and, if not, what sub-type - clear cell?  Presumably it classifies as stage 1 and grade 1? 

At 3 cm. you have every chance you'll never have a recurrence but I guess you'll stick around here for a while for advice on the healing process etc?  You'll learn a lot more (which won't do your carrer any harm either!) and you'll know what to keep an eye open for so that you'll know how to react in the unlikely event that you do have a re-visit.

It's really not relevant to your case to ask whether others here have had recurrences.   Many, many of us have, but  our cases are all very different from yours.  To illustrate - like you, I'd barely been sick in my life by the time of my dx at 69 (can only remember having one night in a hospital (removal of a couple of wisdom teeth - pity about the wisdom).  I had a nephrectomy in Dec 2011 and immediate recurrence - another tumor, almost as large as yours, removed through the same 10" open incision at the end of March.  This was followed virtually instantaneously by appearance of another tumor which was not visible in April but was five times the volume of yours by the summer.   I still have it, along with a couple of compromised retroperitoneal lymph nodes for all of which I'm now on one of the newest "targeted therapies", Votrient, on which I seem to be doing fine, with the ab wall tumor shrinking.  However, VERY UNLIKE you, my path was stage 4 and grade 4 with substantial sarcomatous change - about the worst news you can get.

There are plenty of similar stories to be had here, the highest profile one currently being foxhd - a charismatic, gutsy and very funny PT - our poster boy for how to handle this illness.  You could do worse than read up some of his threads on the MDX-1106 (now generically named nivolumab) trial that he's in.  He was only expected (by RCC experts) to last a few months and is doing extremely well another year or so on.

The question you should have asked is whether there are others in your boat (in their twenties with a small tumor, caught early) who've had a recurrence - you'll find they are very few and far between.  It's possible but so unlikely that you should stop worrying about it.  The regular scans you'll be getting for a while will provide you with ongoing re-assurance that all is well.

The best continuing support your Wife can give you now is to remind you that your chances are very good that you are totally cured.  The other thing she should do is ensure you don't push yourself too soon.  You're young and will probably soon feel you want to get on with your career, but if you get too ambitious in the first few months you are at risk of setting your recovery back.  So, keep on with plenty of fluid intake and regular but not unduly strenuous exercise until you're ready for it - back off the moment you find you're overdoing it.

You won't really need much luck, but I wish you the best of it anyway!

PS - you'll need to keep a close eye on your BP, as I guess you know.  Do you know why it's been so high? No smoking, regular exercise, appropriate diet and don't be overweight.

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