Recovering from radical nephrectomy

mea01 said:

hello....I had a radical
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

Welcome to the club
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 said:

The scars get bigger??!!!
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

Radical Nephrectomy
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 said:

Thank you for the welcome
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.

First Time Scared Newcomer
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.

Kjackrascal said:

First Time Scared Newcomer
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.

Get it out, the sooner the better
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 said:

First Time Scared Newcomer
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.

Open nephrectomy
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

Von55 said:

Open nephrectomy
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

CT results
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.

icemantoo said:

Get it out, the sooner the better
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.

Thanks for the reassurance!
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.

Kjackrascal said:

Thanks Von55!
Von55, thank you so much. I appreciate the honest reply. I have done a lot of research about the surgery and it matched to a lot of what you said. My surgery is Jan. 26th and I've tried to anticipate everything but I'm realizing I can't control every outcome..which is scary on its own. I can do all the research in the world but I still can't expect and prepare for or control the unexpected. Now is just time to relax and get my rest.

As for getting the "good" kidney ready, well, I have been doing that already since I was told that it has been doing the work of both kidneys for a while. The "bad" right kidney masses have eaten thru the kidney. My lifestyle, thank goodness, is good. Don't drink coffee, sodas much, or tea. Don't smoke and never have been overweight in my life except for the past 4 years when other illnesses gave me complications which limited my ability to exercise. But I always walked and tried to work out on my Wii when this kidney allowed.

But now I experience a lot of flank throbbing and sometimes sharp pain in my rib area and just all around discomfort and pressure which is making the surgery a welcome blessing!

But all your experiences make me a stronger person because I realize there is light at the end of the tunnel and I can & will survive this. Thanks again for your helpful words and I'll keep you posted on my status as things progress.

You're very welcome!
All the very best to you, Kjackrascal! I'll be thinking of you on January 26th and praying for your full recovery. The experience may change your life for the good in ways you never expected, and I hope that this is so!
Von xx

LoriT_13 said:

Advice
I recently found this support page after trying to convince myself I was ok and didn't need support. I'm 40 yo and recently had a laprascopic radical nephrectomy (December 7, 2010) of my left kidney. It turned out to be rcc thankfully enclosed in my kidney, stage 1. Recovery has been very rough.
In some ways I feel extremely blessed that they found the cancer. I was 3 months pregnant when I was diagnosed with galstones. Through that process they found the mass in my kidney. I had my galbladder removed while pregnant, my son was born on October 8th. I had the CT scan to check the tumor the day after I delivered him.

I'm so worried that I won't be able to take care of my baby. Thankfully my mom has been able to help me since surgery. I am just now getting back to lifting him at night on my own. I pray I will continue to get better. I can't wear my normal pants yet. I'm still running around in pj's and sweats. The incision pain and swelling is extremely uncomfortable. I also tire easily.

I am struggling with the question of should I tell my older boys the tumor was cancer? I have 3 older boys (21, 18, & 15). I told them about surgery for the tumor but not the results .
Any advice is greatly appreciated. I'm very scared of the year to come and the risk of returning. Even though I'm told it's less than 5%.

God bless.

What a bummer
LonT_13,

What a bummer,having RCC Surgery right after delivering a baby. I had the same surgery back on 8.1.02 and I am doing fine. It is only natural that you feel a little tired 1 month after surgery considering the galstones and pregnancy. It may take a little longer for you to feel stronger and I have no doubt that a month from now you are going to feel much better than today. As for the recurrance rate that is something that the odds are strongly in your favor and any recurrance can be delt with at a very early stage. As far as telling your boys it is you that has to be the proper state of mind. You had RCC, you had the surgery, it was caught early and you probably will not have any further treatments or limitations for the rest of your life. Welcome to the club.

Best regards, Icemantoo

icemantoo said:

What a bummer
LonT_13,

What a bummer,having RCC Surgery right after delivering a baby. I had the same surgery back on 8.1.02 and I am doing fine. It is only natural that you feel a little tired 1 month after surgery considering the galstones and pregnancy. It may take a little longer for you to feel stronger and I have no doubt that a month from now you are going to feel much better than today. As for the recurrance rate that is something that the odds are strongly in your favor and any recurrance can be delt with at a very early stage. As far as telling your boys it is you that has to be the proper state of mind. You had RCC, you had the surgery, it was caught early and you probably will not have any further treatments or limitations for the rest of your life. Welcome to the club.

Best regards, Icemantoo

Thank you.
I think I am
Thank you.
I think I am going to take sometime to deal with my emotions and get stronger. Then sit down with my older boys at once and talk to them.