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Recovering from radical nephrectomy

wendyleigh
Posts: 9
Joined: Jun 2009

I had a radical nephrectomy on May 06, 2009. I had renal cell carcinoma on my right kidney. The tumor was 7cm. My body is still not back to normal and I feel like I should be doing a little better than I am. I still find it very difficult to wear pants. I also feel like a lot of people think well she had the surgery to take out the kidney and the cancer is gone so she is fine now and it is all over with. Problem is I don't feel that way. Everything happened so fast. I am worried it will come back somewhere else. Does anybody else feel this way?

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Tommorrow morning I am joining other survivors in our local Relay for Life. In 8 weeks it will be 8 years since my surgery. I am starting to accumulate the free survivor t-shirts given at each of these events )I gotta be entitled to something for being a Survivor). Not quite as exciting as waterskiing the year after my Surgery, but I was only 59 back than and at 67 I will probably try something easier like zip-lining next winter on one of the Caribbean Islands..

Anita J
Posts: 3
Joined: Sep 2009

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.

crissoid's picture
crissoid
Posts: 6
Joined: Jun 2010

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?

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

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.

crissoid's picture
crissoid
Posts: 6
Joined: Jun 2010

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's picture
icemantoo
Posts: 1452
Joined: Jan 2010

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
Posts: 8
Joined: May 2010

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's picture
icemantoo
Posts: 1452
Joined: Jan 2010

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.

trulytall's picture
trulytall
Posts: 14
Joined: Mar 2011

hi icemantoo!! I'm new on this site and just wanted to let you know how much I appreciate this info you provide here. I'm also fairly new in recovery (8 weeks) and everything you share here is great info and insightful for recovery. One thing in particular I didn't know was that smoking is linked to kidney cancer. Again,thanks for letting me know.

crissoid's picture
crissoid
Posts: 6
Joined: Jun 2010

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!!!!!!!!!!!!!!!!!!!!!!

bellablue79
Posts: 1
Joined: Sep 2010

Hello. I also had RCC at a very early age. I was dx'd in 1999 with RCC on my 20th birthday. Had radical right nephrectomy and have gone on to have a child, finish college, and start my career. I'm 11 years cancer free and have had very few problems. Good Luck with your recovery!

eweber
Posts: 5
Joined: Jul 2010

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...

glenivymom
Posts: 2
Joined: Jul 2010

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
Posts: 3
Joined: Jul 2010

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's picture
icemantoo
Posts: 1452
Joined: Jan 2010

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's picture
crissoid
Posts: 6
Joined: Jun 2010

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's picture
icemantoo
Posts: 1452
Joined: Jan 2010

I hope as a result of your absence that they do not use your absence as an excuse to raise the postal rates.

crissoid's picture
crissoid
Posts: 6
Joined: Jun 2010

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's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
icemantoo
Posts: 1452
Joined: Jan 2010

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's picture
garym
Posts: 1651
Joined: Nov 2009

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!!

RichGtr
Posts: 12
Joined: Aug 2010

Just signed up so I could post. I have been reading these posts for awhile. First, thanks for great info from those who have been there! Most of my questions have been answered by previous posts.

I have a 3.7cm tumor on the left kidney suspected to be RCC. From the CT scan, appears to be totally contained, but too big and too central to consider partial nephrectomy. A few things I'm wondering about:

I haven't had any symptoms, other than some slight deep aches in my left flank area. I kind of wonder though, if some of the fatigue I feel might be from the cancer. I am 54, and have learned to accept that a certain amount of pain and feeling tired is just part of the deal. Not sure how to tell how much fatigue is just normal. I guess the real thing I'm wondering about is whether I might actually feel better, more energy, etc, after recovery from surgery, due to not have the cancer in me any longer.

I have also had borderline hypertension for the past 7-8 years (about as long is this thing has been growing on my kidney.) When I first thought this might be a cyst that could be removed (from an incidental MRI that triggered the discovery), I was encouraged to read of several cases of kidney cyst removals resulting in lower blood pressure. But a little discouraged to learn that kidney removal can result in higher blood pressure.

Just wondering if your nephrectomies seemed to cause any change in your blood pressure?

I am in good health (unless you count probably having cancer). Ran 3.5 miles a few days ago and did some weights. I've set a goal to exercise at least every other day up until surgery. I am thinking that being in the best shape possible will help with the recovery, and help offset the non-exercise/activity recovery period.

My job already allows me to Telework 2 days a week. I have scheduled 2 weeks of sick leave, and told them I would play it by ear after that. I can telework full time or part time for a few weeks as a transition, also. I'm sitting on 1100+ hours of sick leave time, so no need to feel rushed to returning to work.

However, I do play guitar in a band. And if possible, I'd like to play a band gig about 1 month after surgery. I will shirk all of my "roadie" work. And sit in a chair if necessary.

According to my doc, about 3 weeks afterward I should be able to do most things, short of lifting heavy weights. Some of the things I've read make me wonder if that is a little optimistic.

Feb. of next year, I will be sailing in the Carribean.

For now, feeling fortunate to have caught this before it grew larger and spread.

Thanks!

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

To: RichGtr; My blood pressure has always (30 plus years) been high but has been under control with medications for the last 30 years. I do not recall any problem this caused before or after my kidney surgery in 8/2002. I do recall the surgeon ordering a full physical before my Surgery including an EKG but I believe that is just a CYA procedure. I did have some pains that went away after surgery. I also went to the Caribbean 6 months after surgery. As far as your recovery timeline it sounds a little optomistic. Two weeks after surgery I went to work only a couple of hours a day. You are 5 years younger than I was, but your tumor is a little bigger raising the possibility that they may not be able to remove your kidney and tumor laproscopically and may require a larger incision. You may not fell like playing a band gig 30 days later. To your full reconery; Icemantoo

RichGtr
Posts: 12
Joined: Aug 2010

Thanks for the reply, Icemantoo.

So, no real change in the BP either way. That would be a good outcome. I've been controlling mine through diet, exercise, weigh loss, salt restriction, etc. Still sometimes a little high, like 145/85. I'm just hoping this doesn't push me back on BP meds.

Are you a sailor? I'm going on a charter in the BVI in Feb. Looking forward to that!

If something forces them to abandon lapro, then all bets are off as far as my recovery. I'm basing my 'plans' on lapro. But, yeah, I realize that could change. Seems like 3.7cm is relatively small. But I've seen quite a few accounts finding a larger growth than what they saw on the CT.

I plan on taking two weeks totally off. On the 3rd week, I don't feel ready, I'll take another week, off. If I feel up to it, I will Telework part time.

I'm a little nervous about the band gig, but I hope to do it. It is a couple days shy of 5 weeks.

ConnieH40
Posts: 2
Joined: Aug 2010

I totally understand your feelings and questions. I am scared about the cancer, and equally about post surgery recovery. The tumor was found on my right kidney after trying to track down why I felt like I had a kidney infection, but had urine with no bacteria. The urologist said the tumor is about 4 cm and appears confined to the kidney and he thinks (80-90% sure)it is early stage renal cell carcinoma. I have to have an open procuduere the old fashioned way because it is so deep (maybe another way of saying I am "thick" in the abdomin) and the blood supply so extensive. He also said that he would have to remove a rib in the process. This is at Mayo Clinic, so I trust him, but it sure sounds overwhelming. He stated that at Mayo, they had done research and found that the survival rate was improved if part of the kidney could be spared. So that is the plan. It is only on this board that I have found real people talking about their experiences and what can realistically be expected post surgery. The only thing the urologist told me was that I would be on "narcotics" and would not be able to lift over 10 pounds, but could otherwise do what I felt like doing.

I am finding it hard to sleep and then when I do go to sleep, to stay asleep. All these questions keep going through my mind. These posts have been very helpful.

Thanks to everyone.

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icemantoo
Posts: 1452
Joined: Jan 2010

ConnieH40, I wish I could tell you that the surgery does not hurt. But I can not. There is no way to sugar coat the surgery, but things do get better. This is major abdominal surgery, not a procedure. However it sure beats the alternative. I am 8 years post surgery and I view the surgery as but a bump in the road. If they are able to get all of the Cancer out then there is no further treatment. No chemotherapy, no radiation. No medicine. The first 10 days you are going to feel really sore. You wont even be thinking about lifting 10 pounds. From there everything is uphill. My surgeon wrote on my discharge summary 2 days post surgery that I was discharged without pain. Not quiet accurate. Every body recovers a little differently. Eleven months after surgery for my 60th birthday family reunion I went water skiing. In 3 years I will be 70 and maybe I will try water skiing again.

Johnnyb's picture
Johnnyb
Posts: 17
Joined: Aug 2010

To: RichGre, I see your surgery is one day after mine. It is my right kidney. I just had a surgery 30 days ago to remove my appendix thank God they found this on the same CT Scan other wise may have been on stage 3 or 4 in a couple of years. I will be praying for you and your surgery to go well. Both of us will be going to be recovering at the same time. They are taking mine out from the front making the 8 to 10 inch cut. OUCH! God will be with you. My surgery is 08/30/2001 at 1:00 PM.

Johnny B.

Johnnyb's picture
Johnnyb
Posts: 17
Joined: Aug 2010

I was having pain in my right side going back to May of 2010. Finally on 07/30/2010 my wife made me go to the Doctor. After I was looked at they had be go and have a CT Scan. Before I got home was told to go directly to the Hospital you have a bad appendix they are waiting for you. I came home after Surgery and my Doctor calls and ask me to come in. I was told that I had a large Cyst on my right Kidney they found it on the CT Scan. After more test I was told that I have Renal Cell Carcinoma or Kidney Cancer. It is in Stage #1 about 6.1 CM X 5.4 CM.
Have not had thte surgery yet. kinda of Scared at first and I am still a little well, a lot. I lost my step father to Cancer in 1997. They are going to do a Radical Nephrectomy on August 30 at 1:00 PM. I believe in the Lord Jesus Christ and I have faith that all will go well. Thanks for sharing all your thoughts and explained more to me what to expect after surgery. Keep me in your prayers my journey is yet to come.

RichGtr
Posts: 12
Joined: Aug 2010

Hi Johnnyb,

I had the date wrong when I posted that. My surgery (Hand Assisted Lapro Radical Nephrectomy, left side) is actually Monday, 8/30. Also at 1pm. I check in at 11am, with surgery scheduled for 1pm. I'm in the central time zone (KC area).

I've had this scheduled for a month. Kind of "abstract" for a while. But becoming a little more real every day. Just had my pre-op appointment yesterday. I had been attempting to keep up a good exercise regime to help with my recovery. But, it seems like exertion (running, hiking) make the back pain flare up(like a deep, deep cramp.) So curtailing that now.

In my case they are not 100% certain it is RCC until they get the kidney out and have Pathology check it out. But the doc is at least 80% certain it is cancer, based on the appearance in the CT scan. I think the largest dimension of my tumor is 3.7cm. (Kind of went through a transition of calling it a cyst, then a mass, then a tumor. It is located in the center of the kidney, so a partial is possible, but pretty problematic. I am much more comfortable with removing the whole thing, rather than risk bleeding/leaking complications, and the possibility of missing some of the cancer.

As I tell friends, co-workers, etc., that I am having this done, it seem like everyone has a family member or friend who has been through this. I can't believe it is this widespread, and I didn't know till now.

I count myself very fortunate to have found it at this stage. I (and my doctor) could have easily shrugged off the back pain until it spread. And, if you've looked into this, you know that you don't want to let RCC spread. Totally different ballgame, then.

Best wishes on a smooth, successful surgery, and a speedy recovery!

jo_luka
Posts: 1
Joined: Sep 2010

hi all

it seems many, many people have found out about their kidney cancer through scans for unrelated problems. I also found out about mine by chance - and I got a phone call on my 39th birthday, at work, to tell me I needed to see an urologist urgently.

I had a 5cm renal cell carcinoma on my right kidney. It was removed laparascopically on 27 August. The surgeon and anaesthetist were uncertain about doing the surgery locally (I live in regional Queensland, Australia) as I am obese with a BMI of 45 and this brings additional risks. They also thought it was 90% likely that I would have to have full open surgery. Finally after more testing and discussion they decided they would do the surgery (thank God) and now it's all over with.

All I can say is, I can't IMAGINE the pain of an open surgery, cause the pain of this is certainly enough! I spent 5 days in hospital, had an epidural in for 2 and a half days and had a few shots of IM morphine along the way too. The last two days in hospital I had panadol, tramadol 100mg and oxycontin morning and night. Leaving hospital all I have is a week's worth of tramadol and panadol, and the pain is still pretty intense.

I also have numbness of the belly, and a harsh burning feeling in that area when I stand up - I'm sure this must be nerve damage from the surgery? That is what I have read anyway. I want to buy one of those maternity belly slings or something, to help support my stomach, cause at the moment I can hardly walk because of that and find myself slumping over to avoid the pain.

The tramadol is also interfering with my sleep - I can't seem to sleep longer than 1 hr at a time, even at night. So I'm dozing on and off all day. I think it's also making me constipated, and due to the pain in my belly and wounds, it hurts to 'push' on the toilet as well.

I find myself in tears a lot - I really haven't had time to process all of this - the 'c' word was scary enough in itself, but it all happened so quickly... seemed I just got hit with the diagnosis and then wham, in surgery. I have two teenage kids - telling them was just awful - and my daughter, who also suffers anxiety, is taking this really badly and I'm not sure how to help her. My husband also lost both his parents to different cancers and this is taking a huge emotional toll on him. I feel like our family is falling apart and I don't know where to turn...

RichGtr
Posts: 12
Joined: Aug 2010

Hang in there jo_luka. Hopefully every day will get a little better. Non-metasticized RCC is one of the better "C" scenarios you can have.

I had my left kidney removed Monday 8/30. Hand-assisted laproscopic. Came home Wednesday. Haven't got the pathology report results yet, but I've adjusted to the idea that it is cancer, and it is GONE. And as I've started telling people about my situation, nearly everyone has a friend or relative that has been through this exact thing. A silent epedemic. Glad you found it before it became larger.

My first surgery ever. Certainly painful to get up and down, or even talk loudly. But every day is a little better, fewer pain meds every day (though if you hurt, don't be a hero; you need quality pain-free rest. If I start to over-do it, and the pain flares up, I retreat to a percocet power nap.

My digestive system is not quite working right yet, either. But the fasting, anesthesia, and narcotic pain meds all will do that. "Pushing" is not a good option for me, either. When the pain flares up, I can't even raise my voice.

It's going to take some time. Best wishes on your recovery!

ConnieH40
Posts: 2
Joined: Aug 2010

I had my partial nephrectomy of the right kidney on August 20 and they found that the mass was a type of tumor that is benign!!!!I think that happy news has made the "after" seem much more tollerable. They had to do it the open incision way (10.5 inch scar!)but did not have to remove the rib like they thought. I had a epidural during the surgery that lasted most of the first day and they hydrocodone. The pain was pretty bad initially. By day 4 I was allowed to go home. I used pain medication, but gradually reduced it till now I just use Aleve and tylenol. I had some withdrawal symptoms from the pain medication--intense anxiety, GI disturbance, headache. I know we have to use it, but I would sure recommend that you watch it closely and get off as soon as you can. I really felt better after 2 weeks. As a matter of fact, I am returning to the University this week to resume classes and drove today to the grocery store. I am also walking everyday and am uup to 1/4 mile, but going a little farther each day.

Thanks to everyone for all their encouragement and prayers. I just praise God!

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

Hi Connie H40!
I don't know if you're still on the forum, but was wondering what your tumour actually was? My story is very similar- a 5cm Bosniak 3 cyst, 4hrs of surgery, an open partial nephrectomy with a 14" scar- and my tumour was a benign Metanephric Adenoma. This tumour is rare, and was only identified in 1995. It is impossible to differentiate it from RCC except Immunohistochemically (microscopic pathology etc). I've read that it is the benign adult form of Wilm's tumour, and like Wilm's it results from embryonic kidney tissue that failed to develop into normal kidney in utero. It can (rarely) metastasise, so I'm on 6monthly scans for the next 3-5yrs.
My Urologist told me virtually nothing about this condition- all he cares about is that it was benign. I like to know everything about what's going on in my body, so am searching for as many answers as I can. I am so thankful that I am cancer-free, but open surgery is very painful & I'm still recovering after 7 weeks post-op. Hopefully one day these tumours will be diagnosed more precisely, and fewer nephrectomies will need to be performed. Mine was causing identical symptoms to malignant tumours (except for metastasis) so it had to come out, worse luck!
I hope you're recovering well, and keeping up with your walking!
Von

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Johnnyb
Posts: 17
Joined: Aug 2010

Hello all,

My Surgery on 08/30/2010 to remove my right Kidney didn't go so well. I am OK now but had a hard time during the operation. My blood pressure bottomed out and my heart rate when way up. I also started vomiting during the surgery. Was in suregery for over 4 hours and recovery room over 4 hours also. I couldn't eat or hold any food down for 4 days. Finally on the 5th day with shots for nausea was able to keep Beef broth down, milk and jello. My blood counts were off too they had to give me 4 units of blood. It has been 2 weeks now and I am back to walking did 2 miles on Wednesday but that was a bit much and I payed for it that night so only walking 1/2 mile or so. Surgery his healing very well can't hardly see were I was cut in my belly button or the other 3 cuts about 1 inch. The pathalogy test confirmed it was Renal Cell Carcinoma or (kidny Cancer) They did all kinds of test too afterwards moree scans and ultrasounds. My Doctor is telling my I am clean no Cancer anywhere and I should be able to live a normal life from here on out. I still give the honor and glory to my God Jesus Christ for allowing my appendix to go bad so that they could find this much worse thing that in a year or two would have been termal Cancer. I wish all that have cancer to turn their lives over the Christ and pray for your healings. He is the answer to all our problems. Wish the best ....God bless. Feeling almost normal now.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

To Crissold, garym, RichGtr ConnieH40, Jo_luka, Johnnyb and all of the others who are now new survivors:

Welcome to the Club. I hope each of you is able to welcome all the new survivors 8 years from now as I am doing today. As each of you recall in my earier posts, there is no way to sugar coat the Surgery, but things do get better. I went waterskiing 11 months after my surgery. It was just before my 60th birthday. Any challangers?

Icemantoo

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crissoid
Posts: 6
Joined: Jun 2010

Greetings everyone I'm glad to report I'm back at work I stayed out the whole eight weeks as instructed and glad I did. Icemantoo many blessings to you and your family everyone was such an encouragement to me. I go for my second check up on Nov, 8. I feel good and gained quite a bit of weight. lol But grateful to be able to be here to share my story. So to all the members in the group be blessed take the time you need to heal, luv you guys peace. P.S the stamp is not going up next year congress said no. lol

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

I see there are some new recruits on the board since my last visit, I'm sorry that you are here but welcome aboard. If you are a recent addition to the crew, the worst is behind you for now. I am 11 months post op today and the pain, trauma, and mental anguish are all but forgotten, its nice that our brains work that way. Scars and routine CT's will remain constant reminders but we can all LIVE with that. I had 7 close friends all die from RCC before I was diagnosed following an accident, I carry their shields to battle every day now. I just returned from a 4,900 mile motorcycle trip and have plans to bike Hawaii next May and hike the Grand Canyon rim to rim next summer at age 60. If you don't have a bucket list, make one, a long one, its a mind freeing experience. Live, love, and pray my fellow warriors.

Gary

amurillo63
Posts: 29
Joined: Sep 2010

Hi Wendyleigh,
I was wondering how you are doing now... I just had surgery to remove my right kidney on Oct. 7th, 2010 I hope all is well with you! It is always a reason to celebrate when I hear from long term survivors!

mea01
Posts: 4
Joined: Nov 2010

hello....I had a radical nephrectomy on sept 7th,2010..also had gallbladder removed with a small hernia repair....they removed my left kidney..I was so scared..I still am..I can't help but feel it will return some where else on my body..I'm still real tired...but not as bad as in sept.I'm still uncomfortable wearing pants...still wearing stretchy banded waist pants.The doctors and most of the people act like its no big deal...but it is.I guess I am thankful that the cancer was all contained in the kidney and that it hadn't spread to other organs..I can't say that everyday I feel better...more like every week it gets better and now I can move more freely...especially when I take a shower..that was my daily dread for awhile.my tumor wasn't as large as yours mine was 5.6cm..it looked huge on the ct scan.the tumor was found by accident so like you everything happened so fast.I'm thankful to have others who are in the same position as I.I feel a little better to have shared my feelings with you

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Amurillo63 and mea01,

Welcome to the club of all those who have had "the surgery". Things do get better and for those of us where they "got it all" we can look forward to a long and healthy life and those wonderful contrast drinks for each yearly CT scan. We can also show off our scars. which are like a fish story. They get bigger every year.

Icemantoo: surgery 8/01/2002

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

Blimey, I hope not- mine's nearly 16" NOW!!! My husband encourages me to tell people I was almost bitten in two by a Tiger shark- lovely guy, so diplomatic...
I can't believe the difference a few weeks makes to the recovery process. Not true to say I'm pain-free but I'm starting to sleep on my left(incision) side, and & holding a stall at our local markets this weekend, something I couldn't even envision last month- plus am now a partner in a local theatre company (& performing as well as directing). No water-skiing for me, Icemantoo, but life sure does go on. Just need more coffee on those busy days, and a darn good nap when it's needed!
I hope everyone here is finding strength & peace as the days roll toward Christmas, and that we each can rejoice, esp now that our surgeries are part of the past.
Von xx

BKJ
Posts: 3
Joined: Dec 2010

September 28, 2007 is a date I'll remember forever. That's the day I had a radical nephrectomy of my right kidney. But, I also had cancer going up my vena cava and it was floating in and out of my heart. The surgeon at Hopkins told my husband and me that I probably wouldn't make it off the operating table. I have a scar from between my breasts to around and below my navel. Not only did they remove my kidney but also had to cut my vena cava in half to get the cancer that was in it. They had a cardiac team in the operating room because they thought they might have to crack my chest open also. I was 60 years old at the time of the surgery and, in my opinion, came through with flying colors. I had the surgery on Friday and was released from the hospital on Tuesday morning. Yes, it was painful for about a week or two. What else can you expect when you have an incision that huge. I have had routine CT scans and bloodwork every six months since my surgery. They will do this for 5 years and then once a year if I want. Do I worry that the cancer will come back in some other location. You bet I do. But, it doesn't rule my life. I retired last year and am doing a little traveling. I've had two grandchildren since my surgery and am really enjoying them (one is just one week old). So, my advice is to live life to the fullest. We can't change what the future has in store for us. And, I thank God every day!

amurillo63
Posts: 29
Joined: Sep 2010

Thank you for the welcome Iceman, I am very grateful for the input from fellow cancer survivors. NO ONE can RELATE like someone that has been through it.

Kjackrascal
Posts: 6
Joined: Dec 2010

I am a 45yr old female. This is a very scary time for me..I've been diagnosed with precancerous tumors and polyps in the past and have beaten the odds each time. Surgery never bothered me. For some reason, this time, I am scared out of my mind.

One of the reasons may be that my Bosniak 3 mass has pretty much eaten my right kidney, it's 17cm, and causing me a lot of pain & uncomfortableness daily, since it's pushing with pressure on internal organs. My urologists believe that it may be cancerous but are waiting until surgery for final diagnosis - Jan. 26th, 2011. (The only time when all the surgeons could get together! I have other complications from a past surgery that will also be repaired at the same time.)

Due to its size, an open nephrectomy is only option but I have heard of many complications - from flank bulge to nerve damage. What is the reality of that and any helpful suggestions to combat pre-operative jitters and post-operative complications?

I have some time to prepare but it's looming over me as each day passes and I'm a nervous wreck. I'd appreciate any help you "veterans" can give. Thanks in advance.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

I do not blame you for being scared.I sure was at the time. I waited over 8 weeks from diagnosis to my surgery back on 8.1.02. The waiting is not fun. As the Bosniak classification goes your mass is either Cancer or will become Cancer over a period of time. Surgery cures Kidney Cancer if the Kidney is removed before it becomes Cancer and spreads. I wish I could sugar coat the surgery, but I can not. All surgeries carry a risk, and nepharectomys have been around for years and most people do not have complications from this surgery. The complications arise if you do not have the surgery before the mass becomes cancerous and spreads. In my case I had a pretty obvious tumor and it was Cancer on the pathology after the surgery. Yours may or may not be cancerous, but it still must come out. This surgery far outweighs the alternative.

Kjackrascal
Posts: 6
Joined: Dec 2010

Thanks for the responses. You're right..now is the time to get this done and stop wasting time!

Well, it's getting down to the wire. Surgery is on the 26th of Jan and the docs have taken me off work to get my strength up for the surgery..so I don't overwork myself before the surgery.

Trying to keep a positive attitude. But all of your responses and support have been very helpful. I'm at least mentally "somewhat" prepared. All you survivors have been an inspiration to me. From all your experience I take from it that recovery starts with the first breath after surgery, the first time your feet hit the floor for your first stroll. I have made a vow to myself to make me a priority. I have always been a workaholic..which is why I waited so long to get this done..but now it's time for me. No backing down from this! Thanks for the words of encouragement and I'll keep you posted on how things go.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

I do not blame you for being scared.I sure was at the time. I waited over 8 weeks from diagnosis to my surgery back on 8.1.02. The waiting is not fun. As the Bosniak classification goes your mass is either Cancer or will become Cancer over a period of time. Surgery cures Kidney Cancer if the Kidney is removed before it becomes Cancer and spreads. I wish I could sugar coat the surgery, but I can not. All surgeries carry a risk, and nepharectomys have been around for years and most people do not have complications from this surgery. The complications arise if you do not have the surgery before the mass becomes cancerous and spreads. In my case I had a pretty obvious tumor and it was Cancer on the pathology after the surgery. Yours may or may not be cancerous, but it still must come out. This surgery far outweighs the alternative.

Kjackrascal
Posts: 6
Joined: Dec 2010

Mass size is 13cm not 17cm..oops..lol..

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

Hi Kjackrascal!
I can relate very well to how you must be feeling- I was diagnosed with a Bosniak3 tumour in late August this year, and underwent a partial open nephrectomy in September. All signs indicated that this was RCC but because the tumour was small (5cm) I was able to have a partial. I didn't receive my results 'til 6weeks later, but the tumour was benign- a rare Metanephric Adenoma which is related to Wilms' Tumour but is not malignant. There is always hope, so don't despair until you know!
The surgery was my biggest fear- like you, I'd had previous conditions & it was a bit complicated. I live in Australia where procedures might be a little different, but maybe my experience will give you an idea of what to expect:
Surgery took 4hrs. That's a long time to be in the awkward position they need to have you in to access the kidney, so backache is a possibility afterwards
With an Open incision, the cut is quite long (mine was over 14") so there's the possibility of nerves being cut & muscles seperated (so- numb areas & bulges are possible- more if you're overweight)
After surgery you may be connected to a lot of hardware! (I had a paravertebral block in place, a urinary catheter, a wound drain, two IV ports, self inflating pressure leg-thingies and a nasal oxygen pump). This was a lot more paraphenalia than with other surgeries!
I had daily shots of Heparin while in hospital, also blood taken daily & hourly obs for 2 days.
The incision was closed with staples, which were removed after 10days- this hurt a lot but is over quickly
I stayed in hospital for 5 days. On the day after surgery I sat up in a chair, and shuffled around as far as the equipment would allow. The next day I started walking around the ward etc, and this helped a lot with my recovery. Once you're seen to be mobile, a lot of the hardware can be removed, which is a big help psychologically! Also, getting yourself into that shower feels like bliss!
Now at 11weeks post-op I still have a lot of fatigue but am starting to sleep on my incision side. For the first 6weeks there was quite a lot of pain (aching near the incision, shooting pains etc) but every day gets better provided you don't rush things. I had a slight bulge above the incision, but it seems to be diminishing & is hardly noticeable now- try to avoid lifting & stretching to hang out washing etc!
I found that a cocktail of antioxidant fruits & veggies with Vit C & acai berries really helped with the healing process- also, drinking plenty of water is a must, and will help the remaining kidney(s) to work more easily.
I hope this helps- please feel free to talk about your fears etc if you'd like!
Von xx

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

Happy Holidays everyone, had a CT right before Christmas and got the all clear, best present Santa ever gave me, I'm officially a one year survivor. I've been drinking more water and following a lower protein diet, the Doc says my right kidney is happy and healthy so it seems to be working but I am worried about one thing...I can chug contrast without thinking about it (always amazes the techs) I hope its not addictive ha, ha.

Iceman, I'm going to water-ski this summer at 60 and tie your record, any thoughts about setting the bar a little higher? I've got the boat, the rope and the skis. You are an inspiration, keep up the good work.

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