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stevez
Posts: 51
Joined: Dec 2017

Hey all; I was just diagnosed with Kidney Cancer last Friday; however, the CAT scan wasn't conclusive as to whether or not it was Renal Cell or the more dreaded Transitional.  My tumor is 5 cm and is protruding (appears to be) into the Ureter.  It has been a whirlwind weekend to say the least and my emotions have been all over the place.  I'm a 60 year old male, married with one child.  I'm scared and of course my family is scared.  I'm having a Ureteroscopy tomorrow and they may or may not do a biopsy.  Surgery scheduled for the 12th of December.  I have told my boss I'll be out and of course he is supportive, but I don't recall the Urologist telling me how long I'll have to be off work.  I keep hearing 3-6 weeks and I know if it turns out transitional, it will be a tougher recovery and I'll be out longer.  I've been reading here a bit today and must say it's helpful to know what to kind of expect.  I see that I should expect some fairly long-term fatigue.  Thanks and I look forward to learning more.  Steve

icemantoo's picture
icemantoo
Posts: 3326
Joined: Jan 2010

Stevez.

I had just turned 59 when I was nephed 15 years ag0. Play it by ear for when you go back to work. A lot has to do with yorr health and the type of work you do. I was back to a slow normal at about 6 weeks.

 

 

Icemantoo

Rockspin
Posts: 77
Joined: Aug 2017

I was lucky I had no fatigue after 2 weeks just don't overdo. Good luck to you and keep us informed. I know it's scary but we have all been through it. Keep checking in.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hi there. Sorry you joined us, but welcome. My tumor was found in Aug and I was 38. I am now 39 and just had my kidney removed 4 weeks ago. I was written off work for 6 weeks, but I will see how I feel at that point. Everyone is different, but we all should take our time!! I was warned about that and now I know why. My fatigue was dreadful from this past June until my surgery. Since the tumor has been out that has pretty much disappeared. I do take several rests during the day. Not necessarily sleeping, but I start to feel weak and then sit or lay down for a bit. I have that and nausea still from the surgery. I haven't tried to do anything ridiculous except walk and clean a bit. I still have to pace myself. The biggest thing that  affects me is if I don't drink enough water. I get shaky and my legs turn to jello lol. I wish you all the best!!!!!!!! Glad to hear your surgery is booked. It will be here and gone in no time.

 

stevez
Posts: 51
Joined: Dec 2017

Thank you all for the comments, thoughts and well wishes.  It has helped me reading others experiences and I'll certainly share mine.  Appreciate it.  Steve

stub1969's picture
stub1969
Posts: 888
Joined: Jul 2016

I'm glad you found us.  I hope we can support you and answer your questions as you travel this journey.  I, too, had a tumor a little over 5 cm.  It was removed in August 2016.  I was back to work (part time) a week later and full time two weeks after surgery.  I'm an elementary school principal, so I was able to dictate my schedule a little.  But I was ready to get back to work and felt  good, so I'd rather be around my kids than look at the walls.  Like others have said, its different for everybody.

My advice is to try and trust your medical team and find comfort in your family and friends (I found comfort in prayer).  Soon this will be out of you and you will be on the road to recovery.  I wish you well!

Blessings,

Stub

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

Welcome Steve. Wish we coulda all met under different circumstances but such is not the case. I come at all this from a different angle because my wife was the one that had the diagnosis.

all of the above posts are full of good advice because they are the ones that have been there and done that.

Lean on your family when u need to. Believe me, they will be your rock......and of cours, all of us here.

Good vibes and well wishes to you my friend.

BeBlessed
Posts: 16
Joined: Nov 2017

Steve, I was diagnosed with a 6cm tumor last month and my surgery is scheduled on 12/12 also.  This forum has been a true blessing..I had the same question as you regarding the recovery and the shared comments from others who have been through this process has helped relieve some of my anxiety. I wish you the best with your surgery & know you're not alone on 12/12..Wishing us both a speedy recovery. Be Blessed

 

stevez
Posts: 51
Joined: Dec 2017

I agree that this site has helped relieve some of my anxiety and I appreciate everyone's comments.  Good luck to you on your journey on the 12th as well.  God Bless. 

love_of_my_life
Posts: 77
Joined: Jul 2012

Steve, we started this journey in 2012.  You are not alone.  You will be in our daily prayers.

Keep us up to date on future procedures.

Tom and Holly

donna_lee's picture
donna_lee
Posts: 1001
Joined: Feb 2009

There are 5 main kinds and various sub types, and until there is a sample to examine, you won't be told the "brand."

and FYI, mine was already Stage IV (had metasasized) at Dx in 2006.

Hang in there.

donna_lee

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

We are close in age. Full Neph for me. Doctor restricted me for six weeks to only walking for exercise and to lift no more than gallon of milk. It was pretty much right on. After 6 weeks I was pretty much back to myself, but listen to your body. It lets you know real quick if you over do it. 

stevez
Posts: 51
Joined: Dec 2017

Thanks again to all for the welcome and the comments.  I had the scope procedure yesterday (utereoscopy) to really determine if I needed to have the kidney and the uterer removed (renal cell versus transitional) and I am so very thankful that I only need the kidney removed.  My 5cm tumor is protruding into the uterer but isn't a part of it (sorry for my poor descriptions).  My doctor said it was the best possible scenerio.  I'm scheduled for December 12th.  I didn't know that they were going to be putting a stent in my uterer until yesterday and that thing is painful.  Not complaining as I'm very thankful and blessed that my tumor was detected early and I only need the less invasive surgery.   The cramps from the stent are pretty intense at times and thankfully I only have to have this for a week.  Have some pain killers but they don't really do much to relieve the cramps.  Also have me taking AZO to help.  Thanks again to all and I am praying for everyone else on this journey.  I know that many others have tougher journeys and I pray for them.  Thanks again.  Steve

DreamOnDeb
Posts: 112
Joined: May 2017

Hi Steve,

My husband was in the same boat as you.....he had to have a biopsy because it couldn't be confirmed from the CT whether or not he had renal cell or transitional cell carcinoma.  His, too, turned out to be renal cell and he only needed his kidney removed.  He had robotic, laparoscopic surgery and he healed pretty quickly.  He was just told not to lift anything more than 10 pounds for a week.  He stayed out of work for 6 weeks, but probably could have gone back after 4 weeks.  His job is pretty strenuous at times, so it would really depend on what kind of job you have.  Good luck to you!  You will get through this and it will all be behind you soon.

stevez
Posts: 51
Joined: Dec 2017

Thank you!  Hope your husband is doing well!  Steve

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Best wishes for your upcoming procedure.  I'll keep you in my prayers.

Donna~

stevez
Posts: 51
Joined: Dec 2017

Thank you Donna.

 

jazzgirl's picture
jazzgirl
Posts: 195
Joined: Nov 2017

Hi Steve,

I'm glad you found the site before your surgery.  It was at least a year post-surgery before I discovered it, and a bit longer before I got the courage to join.  I was lucky to have the whole six weeks to recover, and then some.  I probably could have done work, but was glad not to have to.  Seems like a number of people will have surgery December 12th.  That's a special day in my faith tradition, so lots of extra prayers go out to all of you.

stevez
Posts: 51
Joined: Dec 2017

Surgery tomorrow and working extremely hard to try and stay positive, but there are times I can't.  I go down a dark hole and think the worst.  My wife is great and helpful, but I'm struggling.  My son is scared to death and I'm trying to be strong for him.  Lord this is hard and I pray for all here.  I keep praying for the strenght to accept whatever His plan is for me.  God Bless.  

stub1969's picture
stub1969
Posts: 888
Joined: Jul 2016

I know (we all know) how you are feeling and what you are going through.  Those emotions you describe are completely normal.  Take this process one step at a time.  Stay strong--soon this part of your journey will be over.

Update us when you feel up to it.

Blessings--Stub

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Thinking about you today!!!!

stevez
Posts: 51
Joined: Dec 2017

Ugh!  After clear liquid diet only on Monday and fasting today my surgery was cancelled for today.  Major water main break down by the hospital and my doctor tried to get me in somewhere else, but couldn't.  This is a tough hit after a week of mentally preparing for it and now it will be on 12/21 maybe.  Thanks all for the thoughts and prayers and this is a small blip I know.  God Bless all on your recovery.  Steve

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Nooooo! Oh crap! Well, only 1 week away. Stay strong!!

stevez
Posts: 51
Joined: Dec 2017

Hi all.  Had my surgery yesterday, which was a full/radical kidney removal that had the 5 cm tumor.  He performed this with hand assisted laproscoptic methods, so I have about a 5/6 inch cut and two holes for the laproscoptic toolds.  Surgeon said it was great; very low bleeding and everything came out fine.  I was just released from hospital a few hours ago.  Incision area and entire stomach area is tender and sore.  Other than that, I feel great.  Ready to recupperate for the low key holidays.  I have an appointment with him to go over the pathology report on January 2nd.  Obviously still nervous to learn the grade and confirm the exact type of RCC.  I do appreciate all the support here as it has helped as I've waited and thrilled that this part at least is over for now.  Take care and God Bless to all.  Steve

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

You sound like a superstar

rest rest and rest

Annie

randyradiohill's picture
randyradiohill
Posts: 66
Joined: Aug 2017

It's a relief to get the surgery past you.  The recovery is a process in itself.  Be prepared for the lack of appetite and fatigue.  It took me almost 2 weeks to get to the point where I could eat more than soup and scrambled eggs.  The fatigue was the tough thing for me.  I'd always been able to force myself to push thru anything except for this.  Once I hit the wall (which was about 2 hours after I started trying to do anything) my body would shut down and that was it.  I'm 8 weeks post surgery and feel great, but I still will feel effects from the surgery even now.  Listen to your body and don't push yourself.

stevez
Posts: 51
Joined: Dec 2017

Appreciate the kind words and words of wisdom.  End of first day home and I'm aleady fatigued and don't have much of an appetite.  You all were right about the gas too.  My stomach is so bloated and painful now.  I do know it will get better thanks to you all sharing.  

sasha_jax4
Posts: 43
Joined: Dec 2017

Hello, my first post. I had clear RCC removed via Davinci partial nephrectomy 5 days ago. Im 37 years old, and I was not expecting to be in this much pain. I have had 3 csections and never did I have a problem. I was up and doing laundry. I expected the same. I have read on here how some went to work within a few days. I have been resting more than before, but up and down the stairs chasing my kids. Overall I feel pain meds not helping and I am wondering if I am being a wimp, overdoing it, underdoing it? Also, what do you all think of genetic testing for knowledge of future risk or risk to kids? Hope I dont sound too whiney; just feeling a little defeated today,

stevez
Posts: 51
Joined: Dec 2017

Hi Sasha.  No, you don't sound wimpy.  These really is an invasive surgery and it's going to take time to heal.  Just woke up and on day 2 of my recovery.  I feel a little better than yesterday and plan on just resting.  A quiet Christmas is planned and I'm looking forward to it.  I'm 60 and don't have little children to try and take care of, so you have a double wamy.  I wish you all the best in your recovery; just take it easy.  Also, I don't think the pain meds can do much for the type of pain we feel after this. The pain from having your internal organs shifted and the CO2 gas that seems to be the worse part for me at least.  I stay on my pain meds religiously for now to try and keep it level.  Best of luck to you!!!  Steve

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

sorry you are here but so glad you are on the other side

Sounds to me  you are very much overdoing it

This is major truam to your organs... slow down

I had two c section but this is completely different

 no one went to work in a few days... if you read it it is a very rare one off

almost everyone is out of action for a week and then slowly recover

At five days I was doing nothing other than walking and washing my self

have you got help

 

you are doing more harm than good..

 

Annie

sorry.  rushing out door for xmas. Things

sasha_jax4
Posts: 43
Joined: Dec 2017

Wehavetimeatall thank you for your words! I have help, but I'm trying not to burn them out. As a mom of little ones I feel like we can't skip a beat. I feel better after your comment. I will try to cut back and heal. I think I had predecided that this was not a big deal. The surgery small in comparison to the old days and treatment not as bad as what some with cancer go through. Not to minimize what everyone here is going through, but I minimized it for myself. Thank you again! This is a bigger deal than I planned. 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

are procedures that help you return to your normal self. Nephectomies are procedures that will forever alter your physiology. And not improve mother natures design. It can take a long time before getting used to how it makes you feel.

I can also tell you that I've never been as deconditioned and therefore permantly fatigued as I am now. Rebuilding strength and endurance can happen only as fast as protective reflexes allow. It takes longer in bad weather. It makes for a long winter.

sasha_jax4
Posts: 43
Joined: Dec 2017

Thank you all. I appreciate the kind words. You are right. These are all things I would tell someone else, but once I put myself there it was different. I appreciate your support. Glad and not glad to be part of an elite group :). Stevez I agree the internal pain of getting shifted around is a bit of a body shock. Good luck with your recovery. foxhd wow so well said. Glad I found you guys.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Way to go! You both made it through. I am glad to hear it all went well. Sasha, my surgery was 7 wks ago and I JUST went to work lastnight for 3.5 hrs. I still get sore and if I am up too much my stomach swells. Recovery was indeed painful and I too found certain pain meds did not work. Have you asked for a different type? It may help. Please do not push or force yourself. It takes time. I understand you have children, but you do need this time to heal. And healing takes a long time. Fox is right when he said it forever alters your physiology. Take care and have a great Christmas (Stevez too).

stevez
Posts: 51
Joined: Dec 2017

Thank you Annissa.  My recovery is painful and I'm very sore.  I can tell it's from where they stiched me up inside as it's very tight.  Coughing or laughing is a real experience!  I'm not going to rush anything either and I'll sit/lay around until I feel better.  I am taking Hydrocodone and it doesn't remove the pain completely, but does seem to dull it a little.  I still feel so bloated and don't have an appetite either, but that's not worrying me!  Oh well, one day at a time!  

sasha_jax4
Posts: 43
Joined: Dec 2017

anissa thank you for your insight. Hang in there Steve, sorry that this is what you are going through but we are right there together. I have found bracing pillow over belly helps with cough and sometimes ice pack for a few minutes takes things down a notch. Last day and a half I have stopped running around the house and pain is bearable, so don’t over do it! 

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