CSN Login
Members Online: 7

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: 1529
Joined: Jan 2010

Jack,

 

You are going to have good days and not so good days. Gradually thing do get better most days. You sound like you are in excellent shape and that should help your recovery. Do not push yourself those first few weeks and months. You just had major abdominal surgery. Glad to see you made it thru the heart scare with flying colors. That ia not part of our normal initiation so you should receive a few bonus points for that.

 

Icemantoo

Jackaroe's picture
Jackaroe
Posts: 14
Joined: Feb 2013

thanks iceman, i've been already influenced by your previous advice to newbies like me to take trauma of the operation seriously.  Of course, as a competitive runner, I had partially been emotionally coping by telling myself how soon I was going to be back to peak condition - lance armstrong without the drugs.  so you're moderating advice to me is very very needed.  perhaps it comes down to listening to and respecting my body.  

i guess my biggest question now is how to handle back to work.  i'm a professional counselor, and so i sit around on my butt all day talking to people.  not physically strenuous work to say the least (that's why i run), however i have a very busy practice along with an office setup that will require me to go up and down a flight of stairs like 8-10 times a day.  as a sole proprieter, i have no sick benefits, and i am the sole provider for a family of three. 

 

the bonus points......i'll take 'em!

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

That was a quick initiation, huh Jack? You'll be giving those running shoes a rest for a while. Take your time recovering. You don't want to set yourself back just to get back to training. We will teach you the secret handshake soon.

Jackaroe's picture
Jackaroe
Posts: 14
Joined: Feb 2013

thanks fox, you guys are awesome.  I think the quick initiation was a real blessing.  Not much time to stress about things.

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

Well, folks it has been quite a journey in my life since having my right kidney removed.  The RCC is gone according to my Doctor.  Had the Surgery in August of 2010.  Have had yearly check ups all the results were good no signs of RCC returning.  I did have to go back and a repair done in 2012 the incision herniated and mesh had to be put in to parch me up.  What worries me is this my step father had his kidnry removed last year and they told him we got it all. Now the tumor has returned and the RCC has spread to his lungs and liver.  I keep thinking when will mine returned.  I have read so many cases were 4 to 5 years later it returns in another area like the lungs, liver, or bladder.  Mine was Stage 1 about 3cm and they tell me it was completely contained.  I am also fighting with my diabetes which isn't easy either.  So a little depressed from time to time.  I do trust God for all my needs and if I didn't this would be a little harder to deal with each and every day.  God bless all of you and thanks for sharing your thoughts. 

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

Johnny, glad to hear you're so well but sorry to hear you're feeling down.  Having diabetes doesn't make it any easier for you and maybe makes you a little more vulnerable to mood changes?  You'll need to be careful about lifestyle - appropriate diet and exercise etc. and you probably fully appreciate the values of meditation, prayer etc.

However, the thought you should keep in front of you is that all cases are different. 

Your Stepfather's prognosis was very likely worse than yours.  It's true that RCC can pay a return visit, even after very long periods, but recurrence is very much related to stage at dx/nephrectomy.  I had a nephrectomy sixteen months after you had yours and although seemingly clear I had recurrence in three different locations within six months of my first op. 

A couple of messages above your is one from Fox, whose story has already almost passed into legend - he's had so many unwanted boarders to deal with that it's astonishing how well he is doing.   You must remember that Fox and I are older than you are (hell, I'm probably older than your Stepfather!) and we were both stage 4 and grade 4.  I can't remember how large Fox's primary was ( Fox doesn't do things by halves so it's sure to have been BIG) but mine was 9 cm and the main secondary that I now have had grown from invisible to 5 cm between April and September.   We could both have been expected to have return visits (both of us could very well have been dead by now but we ain't!). 

You, on the the other hand, with a small tumor - mine was approx.  27 x the volume of yours (cube on 3 v cube on 9)  - and stage 1, which is the best, against Fox 's and mine at 4, which is the worst, have about as good a prognosis as you could have hoped for.

Johnny, we all get a bit down at times (and some of us get very down) but, apart from feeling flat sometimes, you're feeling quite well because you are quite well and with a sensible lifestyle you could still be feeling well even at iceman's advanced age!   It's extremely likely that you will never have any recurrence.

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Every so often I get a little down. Usually associated with pain. But I can tell my wife that I need a few hours or by tomoorow I'll have gotten over it. John, don't spend energy in a negative state. Totally unrecoverable resource. Find a way to switch gears. Then concentrate on "GOOD" aspects of having been NED. Sorry about your stepfather. I get very sorry every time I hear less than good reports. Take care of yourselves and think about doing well.

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

Hello to you folks! Well, a first in my life sharing my experiences online.  And from all I have read, truly blessed to discover this site!  I am 2 weeks tomorrow from surgery to remove left kidney due to RCC tumor. A whirlwind of 20 days from discovery to removal. Still reeling and totally not knowing what to expect, as this is first surgery in my 62 years of life.  And for extra spice, I suffer with Fibromyalgia, Chronic Fatigue and autoimmune issues.....whoops, what is happening!  From a very vital and active happy person only 8 years or so ago (didn't lose the happy part!).  So all and any advice and information will be inhaled, as I start my recovery. No report from doctor yet on where I am at, but at this point ignorance is bliss on that subject. Blessings to you all and advance thank you for any input!  You have such stories, and I find hope from them.  

icemantoo's picture
icemantoo
Posts: 1529
Joined: Jan 2010

Gail,

 

At 2 weeks out you are no doubt alittle sore from the initiation to our club. Definateky not fun, but each day gets a little better. It is a little hard to weigh in on your prognosis without knowing the size of your tumor. Otherwise I might say something inappropriate or sound too pessimistic or optomistic and what you want is the truth.

 

Icemantoo

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Hello Gale. 50 or 62? Anyway, it sure is an uncertain time from discovery to surgery through recovery and looking into the future. Tell us more. We air all our laundry here. And often wear our johnnies untied with the opening in front. Some people here learn alot and become well armed in their defense. Others just need to vent and we never hear from them again. Those we worry about. Being in our 60's does bring baggage that we never planned on. But that is life. The trick is to keep smiling and keep that shot glass(disguised as a coffee cup) full of tequila. Then emptied, then filled, then emptied...you get the idea. Anyway, after a while, it is just another pia we deal with. Welcome.

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

Hi foxhd and icemantoo!  Thank you for 

your responses!  I would say that the shock

of what I got, vs what I expected did cause 

me to vent in a panic:) But I am here to

soak up all advice and knowledge gained 

from your experiences or learned in life.

So thank you. Here is all I know so far:

I insisted to my doc and rheumatologist they 

run tests to figure out why I am living in chronic

pain. They found a 4cm renal cell carcinoma. 

I was lucky found a wonderful surgeon, Dr

Giju Nair and he did a complete removal of

my kidney through about 8 in incision. I see

my local Dr today, but surgeon is on vacation 

so I have absolutely no info on the pathology

report.  I will share when I get the news. So 

For now anything to help me know what to

expect as far as when I will start to feel like

"me" again mentally and physically would appreciate 

. I suspect the Percocet is playing a huge role in

my depression etc.  Crying a lot and that is not

me:). I am happy to be able to share with those

who KNOW this journey!  Blessings to you....hope

you have some fun plan today!    Gale (born in 50:)

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

Hi Gale,

Nearly everyone here has been through the whirlwind you describe and the resulting roller coaster ride of emotions that follow.  Your brain goes into shock when they tell you that you have cancer and it doesn't get a chance to come to terms with it until things settle down after surgery, its all a normal part of the process of healing which IMO, takes longer mentally than it does physically.  My tumor was about the same size as yours, its been 3 1/2 years for me, feeling like me again physically took several weeks, but I was also recovering from the injuries due to an accident that led to my dx, feeling like me again mentally took a few months.  Talk to your doctor about how you are feeling and don't be afraid to ask for something to take the edge off, many here have done so and felt much better.  At 4cm its likely that it was cancer, preparing to hear that so you don't lose focus on everything else is a good idea.  Its also a good idea to have someone with you for support and another set of ears.  You are going to hear about type, stage, grade, and margins from the pathology report, clear cell is the most common type, small numbers on stage and grade are best (yours could well be 1's), and clear margins means it was contained giving you the best chance at a cure with no other therapies required.  Make sure you get copies of everything because more questions are going to come up later on.  You'll want to ask about a follow-up schedule, but plan on routine tests and ct's for about 5 years.  You have early detection on your side and at this point every reason to believe that you have decades ahead of you.  Keep us posted, we'll help you through it.

Godspeed,

Gary

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

Thanks to you for the great overview...and I can see getting through 

this will be enriched and an easier journey with this "club". Very

helpful to know what will be presented.  Saw my doctor today

and he thinks I am "great" for 2 weeks out.  But he did not 

have path report and Urologist on vacation until Monday. In

the meantime, I will read more posts here, study a bit on internet

and practice patience:). I am taking in all the positive comments/suggestions

on this site.....again SO glad I found you all.  I will be back to share my 

specific findings and look forward to your take.  Optimistic that I 

will be ME again one day, and boy is my husband hoping for that too!  

Blessings,  Gale

 

 

icemantoo's picture
icemantoo
Posts: 1529
Joined: Jan 2010

Gail,

 

I wanted to telll you earlier that  everything would be OK before, but I did not know the size of that little buggar. Now that we know it ie 4 cm., we know that your chance for a full recovery from the surgery alone is as close to 100% as you can get. Please no roller coaster rides until next summer.

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

Hi icemantoo.  I can certainly keep my patient shoes on easily 

until Monday with your take!  Thank you...my primary doctor

is anxious to see as I heal, if this may have the bonus of 

relieving my Fibro type symptoms....wouldn't that be just  

a miracle?  Time will tell. He mentioned a syndrome called

Paraneoplastic Syndrome seen sometimes with cancers.

Will research a bit, just all in all feeling so much more 

optimistic!  

Thank you.....

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Hi Gale. Don't know as much as the other folks on here just wanted to let you know you are in my thoughts.!

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

I see we are both new so shall learn together.....isn't it great

to have a place others are supporting you?  So I thank you for

connecting with me! Sweet picture....beautiful kids:). I look forward

to checking back to see how all is going for you.  Stay positive

as so many folks here will tell you....blessings to you!

klamart
Posts: 3
Joined: Feb 2013

Hi Gale and all,

 

This is my first time posting as well, though I've been browsing around here quite a bit since January of this year.

I had a right radical nephrectomy on 2/4/13 via open 13 inch incision to the flank,  just two weeks after the mass was discovered.  This was so quick because it was quite large... path report came back Stage 4 RCC with a Furman grade of 2.

No evidence of mets to vena cava or lymph nodes; some nodes from chest wall adipose tissue were disected and a rib was resected and sent to pathology as well...qll negative.  Chest xray clear, original and repeat of CT scan to abdomen/pelvis was negative for evidence of mets also.  The reason it was Stage 4 is that it crossed the margin of gerota fascia around the kidney microscopically.   My surgeon brushed this off and said the mass came out easily and appeared well contained.  Renal oncologist said that he recommends investigational studies or some results on current meds that are now rolling data out, as well as CT scan (one head to toe) every 3-4 months.  

 

Sooo... into my tenth week of recovery and just now finally feeling some energy return.  I had a couple of glitches in the process.... very low blood pressure after surgery (blamed on intolerance for epidural fentanyl) that sent me to ICU for 2 days on drugs to raise my blood pressure.  This was a bit touchy because I'm the nurse manager of that unit... yikes!  But I guess the nurses like me because they took good care of me :-).  I was in the hospital for 5 days total and then two weeks after getting home had some bleeding issues from the incision that sent me to the ER... a venous ooze that had my hemoglobin down to 8... a few stitches and back home I went after much pleading and promises to come back if needed!   

 

The extreme fatigue as well  as varying pain was a constant companion up until the 2nd-3rd week of March or so... then the pain was gone and I'm left with that 'tightness' around my right midsection that I read about from others here... numbness to the right side of my abdomen and a moderate fullness, though no hernia, to the right side.  The waistline is a bit lopsided!  Sounds like nothing unusual as compared to other tales.  I also have noted some peculiar rt hip weakness when walking.. flexing my right leg at the hip has been a little shaky, and that is what I am working on now.. a steady gait.  I'm wondering if the numbness/poor muscle tone has also affected this.  Getting better though! 

 

I'm keeping a positive attitude and encouraged by my oncologist who told me he's guestimating 70% chance that we have  a cure with surgery, based on my patho report and discussion with surgeon. 

Sound about right?  That Stage 4 had me worried, but the grade 2 not so much. 

Wonderful group of people here and since I have to join the club, I'm glad it is this one! 

Karen

 

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

Yes - sounds about right to me, although you didn't mention the histology - clear cell ?  A 13" incision is pretty big.  Your tumor being almost perfectly spherical probably necessitated a larger open cut than the usual less bulky lesions.

It sounds as though you're handling it very sensibly and you certainly have the right connections!  It's not every nurse who makes a good patient, but you seem to be fine.   Although you have access to top experts, there are lots of questions that they can't answer from personal experience so do feel free to ask all you care to here and you're likely to get helpful replies from one quarter or another.

The same for Gale and other newcomers, of course - all questions welcome.  Karen and Gail/Gale - both attractive names but not so frequent in the UK. Are they popular names Statesside? We seem to have a few of each on the threads but not normally a G of the windy variety!  Is that an unusual spelling.  {iceman: don't answer that - I don't trust your spelling at the best of timesLaughing.]

 

klamart
Posts: 3
Joined: Feb 2013

Thanks Texas for the reply.. my name was popular in the US during my era. I don' t hear it too much in younger generations though.  I appreciate your willingness to answer questions; the problem with being a nurse is that frequently other health care providers tend to assume that I know what is going on... but of course I don't always because my specialty is limited to acute illness... recovery and long term management are foreign to me, particularly oncology.   Even with my access to physicians ( and not necessarily top experts... all depends on who my HMO wants me to see) I have to advocate for what I want/need to know etc... docs are very busy people and it always pays to look after oneself. 

I keep my physicians busy with questions but you're right, they don't have the personal experience that all those here have.  My histology was clear cell, yes;  sorry for the omission. I'm still waiting to hear what sort of options I have with investigational or other medicines and I'll likely need to read through the posts to get all the insight on those when the time comes.

Now where did a man from UK get the moniker 'Texas wedge' ?  Is that a golf shot ... :)

 

Karen

 

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

Are you also a golfer, or just a good researcher, Karen?  Maybe a generation name thing? I had a girl-friend named Karen, nearly fifty years ago, but she came from the Faroe Islands, where the name was probably always popular. 

Like you, I was amused by the story - to find that 'Gale' is a bit of a Con. It's almost a shame she wasn't named Constant Gale isn't it? (I also had a girl-friend who was a little shy that her parents named her Gaye Melody but you could hardly turn out to be anything but pleasant with a name like that, could you?)

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

Hello Texas!  Just catching up on posts here.  Saw you had mentioned to Karen that "Gale" was a bit of a "Con" :). I actually have never joined a discussion forum before....hung around reading awhile before I registered, and actually saw majority of members had forum name such as yours, and was not sure what normal protocol was, so used my Dad's pet name.  Lost him this year to Alzheimer's, do miss him!  Anyhow, was not shooting for anonymous, I am Connie, Constance or Gale, they all work:). So tomorrow, Constance will be waiting by the phone for path report from doctor in Spokane. Hope you and others here had a nice weekend...I know I did as today I started to feel like me again!! Whoever that is.....

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

Good to hear that you're feeling more like yourself again and hoping that you'll be able to share a favourable path report with us.

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

Karen, glad you are here-wow lots of information to consider. With your knowledge I would imagine there is a good, and maybe not as good side for you as you are very aware of each detail and significance. I thank you for sharing the detail, for all here to consider. My thoughts are pretty much just that, as I am so new to this all (surg 2 wks ago)and have not received my path report. One thing I picked up on was the weakness in your hip on the surgery side..my surgery was on left side and for first 10 days or so, I had to lift that leg with hand assist when moving it in bed. I attributed it to nerve damage and now is nearly resolved. Your procedure was much more extensive so maybe this is a common thing? Hope yours improves with time as mine did. So looking forward to sharing thoughts and progress Now for the name, Gale:) that was my Dad's nickname for me. Story goes, he wanted to name me "Constant Gale". Of course Mom objected, they named me Constance and I go by Connie. So only my Dad called me Gale, and I chose that when signing up here. Glad you are here and will be sharing my pathology findings when I get them. All in all, for the original findings you had it sounds like there is a lot of positive for you, so do wish you quick recovery....you had a challenging time! Blessings, Connie

klamart
Posts: 3
Joined: Feb 2013

Hi Connie and thanks for the warm welcome! I like the story about the origins of your nickname!  Laughing 

You're the first other person I've seen mentioning the leg weakness; yes I agree, seems to be nerve or muscle damage and mine is getting better as well now that I am walking daily... up to .75 miles now and I'm so proud  haha.   I was a bit concerned that it might be permanent since I feel like I've been cut in half.   

Lots of expertise here and moral support... I can feel the warmth! 

Here's to a good path report when it arrives... blessings to you in return.

 

Karen

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

I've been on the internet for awhile now. Although I don't know how to do much with the computer like posting pictures or documents. Oh well. So anyway when I started, I used my name. Fox. Didn't realize people made stuff up. So sue me. I'm an idiot. The HD part is for Harley Davidson. That was added when just Fox wouldn't work since it and my intials were being used by someone else. The nerve!

As for complaints of leg weakness. Don't be confused. It is not so much weakness as it is loss of energy. Your arms are doing the same thing but my guess is that you don't notice it as much because you don't demand as much from them. I do. And sometimes I'm amazed at the strength loses I find when I am not feeling my beast. (freudian slip. I meant best). When I feel good for a few weeks, I approach pre cancer Fox the jock. The runner and weight trainer. When I have pain, and lose activity, my strength drops in half. When I feel better, I start all over again.

I believe this is due to the body redirecting it's resources toward your recovery. Whether it makes good progress or not. The nervous system is able to shut down what is not a priority. Sort of like turning down the volume of your radio. It's there but not full blast. You can wait it out but remain active so that as the energy returns you have not lost too much ground. This takes a good body awareness and the motivation of a jock mentality. I've been doig this for 2 years now and it drives me crazy. Tex goes through the same thing I am sure. As does Mike and several others. Don't let it get you down. Keep active. and just deal with it.Part of your new life. Much will never be the same. Different. It's just the way it is. Like grey hair, or no hair. Sagging body parts I won't mention. Etc. etc. The trick is to get over it.

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

"Tex goes through the same thing I am sure."

 Sure do!  I endorse everything you've said above (except for not being able to comment about your beast when your slip is showing!)

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

Hi Fox! I am actually going to print this post for continued reminder. What you have learned from living this is the most valuable insight, explanation and motivation (deal with it / get over it / don't let it get you down) I have found. How you describe it made me sit up and take notice! I have gone from the most active, vibrant and busy person to the place I am today and it has been devastating! From your take, and knowledge of body conditioning, I think I ended up so far down, because with each pain flare and step back, I have rested my body to try to regroup, and snowballed down from lack of use.  So if this is my new normal, your logic tells me get over it, deal with it and keep moving! Each "good" day is uplifting, but it is true every day is a gift and opportunity!  Thanks for a new mindset....does settle down my worry to hear my symptoms are common to us with this illness. Going to reread some of your prior posts, I like your take! I will start my day now with a better attitude! Thank you Fox!! Gale

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Gale read back from when I came on board. Tex wants me to blog it. ??blog?? Someday.. The process is this....You are young, healthy and vibrant. Then something happens to your health. Maybe medical, maybe physical. So you lose conditioning. During recovery the emphasis is on a return to "normal." But you were better than "normal." So a return to "normal" is actually accepting a lower standard. Do that a half dozen times as you mature and soon you use a cane. Which becomes a walker, and then a wheelchair.   You want to improve your performance. Not accept a lower ability of function. Put that picture in your head. Now think of people you have known who deteriorated due to accepting less. Pretty sad. I talked with a friend today that I golf with. He got fat after he married in 1975. We met in '79. I had him running marathons by '86. He stopped running in '88.  He is now 100 pounds overweight and needs a golf cart because his knees hurt. Whats wrong with this picture? Can't get him to want to improve because he says that everyone in his family lives into their 90s.  Quality to him is meaningless. He even states that watching TV is his "Hobby!" I could go on and on........

Gale_50's picture
Gale_50
Posts: 17
Joined: Apr 2013

I hope you do go on and on, and that as you ever so gently but honestly nudge those of us reading this to a healthier attitude, others will also have a wake up call!  And so I begin with the first step back.....8 years+ of accepting less and less, so subtle!  Oh my gosh I don't like that picture with me in it!  I DO like to picture me vibrant again, so with that picture and a new attitude here goes:). There is obviously a perfect time for everything, and your words could not have come at a better time!!   Going to look for the post you left that Tex wants you to blog. Maybe you should think about that ?!  Thanks Fox, keep the lessons coming....so valuable!

Connie

Trisha001
Posts: 1
Joined: May 2013

Hi Karen, 

 

I'm new to this forum, I'm having my surgery on July 5th 13 (Rt radical nephrectomy) I'm scared as hell!! I'm no stranger to surgery, I've had a hyst, lap chole, knee scope, shoulder surgery (all that lifting has taken it's toll )  appendectomy.....

This one has me really worried. I read that you had complications, yes the old adage is true for Docs and nurses, what ever goes wrong, it'll be in the cases of Docs and nurses.

 

I'm glad to read that you are doing well and I wish you continued good heatlh and recovery. 

I'm having difficulty with navigating around this website as I don't find it very intuitive. Where do I go to start a conversation as you did? I'd appreciate any assistance from you.

Thanking you inadvance,

Trisha (Canadian Nurse)

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

To start a new post look for the add a new comment under the cancer specific list. Thats where you can ask new questions!

I am 4 weeks past my surgery for a laparascopic radical right Nephrectomy.  Life hs not been brighter!  I understand the dread and the anticipation, but be assured, those are  attitudes you can control with education, talking with survivors here, and adopting an attitude that you have an invader in your body and the best thing you can do is get it out!

Everyone here has felt the same shock, fear and dread you are xperiencing now.  We have all survived it and we are embracing the life giving results as a result of our surgery.

Ask anything here, anything! I was welcomed here and lead through the fear and trembling by caring people who understood.  They are here for you too!

I'm sorry to welcome you into our club, but glad you found us!

Michael

Cleopatras_Mirror
Posts: 1
Joined: May 2013

Hi everyone. I've been reading through the posts for the past couple of days and just wanted to say "hi".  I am really touched by all the positive and informative posts.

Diagnosed with a 6cmx4cm tumor in my right kidney (and hoping it hasn't gotten any bigger since) on May 15th, 2013, I will now have a radical this Monday, 6/3/13. I am confident in my surgeon and his team (and he's not bad looking either, lol!) My family, friends, and co-workers are all so supportive, and I'm a very positive person. I have to be. My kids are watching. I know I will kick ass!

However, the CT scan initially showed that the tumor has gone through the renal vein and is in the vena cava. A thrombectomy was mentioned. Also, there are two cysts in my left kidney and the adrenal gland on that one has a few cysts as well.  All my labs are clean, even the cortisol test to check my adrenal gland function. I'm learning more and more that is common, no flags to ever make you think there's something going on. "Just a back ache", I thought. Turning 40 is proving to be a *****!

So, I just wanted to throw myself out there. I'll appreciate any feedback, suggestions, and insights.

Blessings and positive vibes to you all.

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

First of all, while it is a pleasure to meet you, I am sorry you were forced to come here!  Now that you're here, jump in and ask away.  I had my radical nephrectomy on my right kidney on May 14.  The surgery was without incident adn I am looking forward to a mostly positive recovery.

To say that you don't have a hitch or two more than I would be disingenuous.  You've got more issues going on than I, but based on what I have heard here in this group, you will not find a more supportive group of people on the planet.

In the coming days, stay in touch, I am sure our reident experts will be along shortly.  I'm mostly a cheerleaader.  I try to demonstrate that there is life after nephrectomy and that it really isn't as horrifying as it sounds. 

Start now hydrating yourself and getting in some exercise.  The better tone you have now, the easier the surgery recovery will be. 

We are here for you.  When you want to ask, ask here. When you want a laugh, there are plenty of people here that can help with that. When you want to gripe, bring it on. We've all done it.  When you need comfort, we have that for you as well.

Its a great little club, and if it wasn't for the honor of being in it, most of us would have just as soon passed the  opportunity by.

Peace, this is behind you soon.  I'm having my post op consult while they are working on you!  I'll send up some special thought Monday morning.

Michael

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Get through your surgery first. Plenty of time to ask about issues after. I'll bet things will be different then. Keep the positive attitude.

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

I was catching up on reading and saw you had surgery last Monday.  So, how are you doing other than sore, stiff, and getting over the effects of anesthesia?  Just know you will feel better in about a week, much better is about five weeks, and ready to conquer the world in about six months.  Best wishes for a full recovery and many NEDs.

John

Murrama
Posts: 2
Joined: Oct 2013

Hi

i am 8 days into recovery from a open.  Right kidney with 9cm tumour which was attached to my liver and back muscles.  Small part if liver was removed.

estimated stage T3, N1, M0 and awaiting pathology report

I am a 41 year old female - and my question is has anyone else experienced a tumour attached to other organs or parts of body and what was the outcome?

 

nany thanks in advance.

tbonepoke
Posts: 3
Joined: Nov 2013

 

 

 

Another newbie here.  I found this forum looking for info because I just didn't get that much information from my doctor.  

Like so many on here, it was a fortunate accident that we found my tumor.  I am male, age 54, over-weight and out of shape.  I've been on hypertension and gout medications for years.  Otherwise, in general good health with little family history of cancer - mostly prostate.

I had passed some blood, but just for one morning, then it cleared up.  No pain at all at this time.  A couple of weeks later I had some pain and thought I might have a kidney stone (I've had them before) and went to the urologist, who ordered a CT scan.  It didn't show anything and the doctor concluded I had just wrenched my back and that was the cause of the pain.  The blood could have been from a stone that I had already passed.

I had already left his office to go back to work when his nurse called and said he wanted me to get another CT, this time with contrast.  Turned out the radiologist thought he saw a bit of a lesion, but be could not be sure without the contrast.  The new scan clearly showed an approximately 4 cm solid mass in the left kidney.

Diagnosed on September 13, 2013.  Surgery was robotic assisted laparoscopic radical left nephrectomy on October 28.  Tumor was totally encapsulated I the kidney with no sign of spread to the lymph nodes or any surrounding tissue.  The initial plan was to do a partial nephrectomy, but in a game time decision, the surgeon thought the location of the tumor would make it too difficult to successfully close and preserve the remaining kidney tissue.  This was not totally unexpected.  Released from the hospital after four days.

Saw the urologist a week post-op and got the pathology: clear cell RCC, 3.5 x 3.5 x 2.8 cm, pT1a, Furman Grade 2.  All things considered, good news!  Scheduled for scans every four months for the first year, then adjusted after that. 

Now what?  Basically the doctor just said, “Everything looks good, see you in four months.”  And I’m going, “Wait, there is too much going on I don’t understand.”  Searched for info eventually led me here.  It has been most helpful reading about so many experiences.  Thanks to all who are keeping this long discussion open for newbies like me!  

tbonepoke
Posts: 3
Joined: Nov 2013

How long was it before you guys were riding again?

Thanks

 

GSRon's picture
GSRon
Posts: 1225
Joined: Jan 2013

Oh my favorite question. I waited six weeks, for a short ride. But I can't recommend it. I now have a hernia. Try to wait about six months and wear a kidney belt. Ron

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

Hi tbone,

It was about four months for me, but surgery was late November and snow & ice pretty much determined when I could get out and ride again.  I'd follow Ron's advice, no matter how good you think you feel, one slip and you'l be back in bed where you started.  Walking is a good way to speed your recovery and build yourself up, start with a few short walks every day and work your way up to at least two miles a day at a fast pace, you won't regret it.  Its also important to drink plenty of water to help your body and remaining kidney recover.  Let us know how things go.

Gary

 

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

around a month. I was golfing and jogging in 3-4 weeks. I do remember when I came home, my wife said I had a sh1t eating grin on my face.

tbonepoke
Posts: 3
Joined: Nov 2013

My surgery was five weeks ago today and I am feeling pretty good.  Still get the occasional pulling feeling if I stretch just so.  The first two weeks were really rough.  Then it rapidly started getting better.  Been back at work for a couple of weeks now, but not back to working 12 hour days just yet.  I walked a mile and two-thirds during lunch today and went to Tai Chi class this evening.  Other than being a bit tired, I feel great. I know the incisions are not completely healed, but they are slowly getting better.

It is so tempting to try riding to work while it is unseasonably warm.  It is only 13 miles but I don't want to over do it.

 

icemantoo's picture
icemantoo
Posts: 1529
Joined: Jan 2010

Tbone,

 

I have no doubt from your history and positive attitude that you will make a full recovery from the surgery alone.

 

I do have a few doubts however about your Kidney function which will not show up in Cancer statistics but could lead to heart incidents (more common) or kidney failure over the long term.

 

Hypertension. being overweight, gout and losing a kidney all negativey effect kidney function as does getting older. My suggerstion is that you consukt with a Nephrologist about maintaining good kidney function numbers.

 

 

Icemantoo

Mike Austin
Posts: 3
Joined: Nov 2013

I am a survivor from Leukemia (AML) 15-years back but it all came rushing back this past March with a new diagnosis of kidney and bladder cancer. Fortunately it was noninvasive stage-1 for both locations. I had my right kidney removed and several tumors in my bladder. I was only out of work for 3-weeks...  I feel pain from time to time but try to hide the physical and emotional pain. I work out every day and look really fit. 1-1/2 hour strength training, biking 5-miles a day and jogging about 2 miles daily.  Putting up a good front... The problem I have is I think I am losing my mind. I think my wife and everyone has gone on with their lives and I am on hold. My wife lost 36-pounds and looks great. I wonder is she getting herself in shape to move to the next part of her life if I am not here. She is not availale on an emotional level with me.  I feel alone and lonely all the time now!! I am looking for a support group to talk with someone about what I am feeling.. Thingds have changed and I am not adjusting to it very well.  You cant tell from this rant but I am an upbeat person and enjoy life. Just lost my mojo...

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

Hi Mike,

What you are experiencing is the roller coaster of pain and emotion that comes with having RCC.  I think what happens is that when we're told "You have cancer and need surgery." our loved ones feel the same emotional pain as we do.  Then we go through the surgery and are told "We got it all!" at which point the physical healing begins for us and the emotional healing begins for them, so we get out of sycnc.  Our caregivers believe that a strong front is necessary and that can leave us without the support we need as we heal emotionally as they move back to their "normal" lives thinking we have too. Problem is we live a "new normal" with all the reminders that we had cancer and they don't really want to talk about it anymore its that elephant in the room.  Here you have found a group of people that have been there and understand, in short the support group you were looking for.  We'll answer your questions or listen if/when you just need to vent, for most that seems to be enough, but don't be afraid to seek a group where you can get some face to face support, or a professional if needed.  There is no shame in realizing you need, and asking for, help.  Spend some time reading our stories and getting to know us and join in whenever and wherever you want, you'll feel much better real soon, I know I did.

We'll help you get your mojo back,

Gary

a.oakley
Posts: 32
Joined: Oct 2012

Mike,  I'm really glad you took a chance and wrote on this site.  Your surgery was only in March and I think it does take time to adjust, adapt, heal etc..  I also think there's a certain amount of "mourning" that goes on for both the patient and the caregiver spouse.  Mourning for life the way that it used to be prediagnosis.  All of the healing takes time.  Everyone is different.  It sounds to me like you are a "fighter" and are really doing your best.  I'm impressed with your physical ability and the workouts that you do.  Perhaps that makes people who are your friends and family think that you are back to normal.  I hope that you share how you are feeling mentally with your doctor.   There might be hormone level lab tests to be done, or something of that nature needs to be ruled out.  Perhaps you need an antidepressant to help you for a little while.  No shame in that.  Finding a support group is a great idea, and as another person suggested to continue to reach out on this site. 

I wanted to share with you that when my husband was diagnosed with kidney cancer (almost 2 years ago), I too lost a bunch of weight.  I was very upset, overwhelmed, tired and scared and didn't have much time for a meal.  I had to buy new clothes.  My looks improved.   I had extreme guilt!  The more ill my husband got, the better I looked.  I felt so bad about it I talked to my doctor.  I still feel really guilty.  Stress caused those changes in me.  Perhaps the same thing has happened with your wife.   

safado's picture
safado
Posts: 17
Joined: May 2014

I just joined here after reading every post in this thread.  Thank you for sharing.  It's good for the soul to read such positive, optimistic posts.

I'm a 52 y.o. W/M.  Diagnosed with RCC in March 2014.  Rad Neph L kidney in April 2014.  4 weeks out post op.  Stage 3 on the pathology report - but just barely.

Met with the oncologist today.  Brain MRI scheduled for next week and a PET scan the week after.

Very glad to hear that I'm not the only one hating to wear pants post-op.  Unfortunately, we have a dress code at work....  I started back 1/2 time three weeks post-op.

My CA was Sarcoid, papillary and multi-focal.  12 tumors in the kidney - plus cysts, angiomelolipoma and a stone for good measure.  The radiologist called it the "Elephant Man Kidney."

My wife and I are beyond pins and needles about the MRI and PET scan.  It's a huge fork in the road.

Headed to MD Anderson in Houston for 2nd opinions and treatment/clinical trials if possible.

It's nearly impossible to concentrate at work or otherwise.  

Life quickly went from sunshine and roses with long-term plans to black clouds and the unknown in just a matter of days.

Looking forward to learning more from you.

Thank you!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network