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Glad I found this forum. Radical nephrectomy in 1 week - eek!

Mfbartoli
Posts: 12
Joined: Jan 2013

Wow, stumbled across this forum just in the nick of time. Was searching for other peoples experiences from radical laproscopic nephrectomies and found this site. Hooray! My RCC was found 12/7 and my surgery is 1/23. A little nervous right now. Anxiety goes back and forth between nervous about the pathology results and the actual pain I will be feeling. I think the pain has me more nervous than anything right now. I do not have a high pain tolerance, ok I'm a big baby. 51 (well 52 in 3 weeks) and not in terrible shape, but been better :-) Any input?

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

Mfb,

Not fun being told you have Kidney Cancer and than major surgery right out of the gate, It sure was not fun for me 10 and 1/2 years ago. I almost fainted when Arnold S. was pregnant in the movie Junior. If I can get thru the pain any body can.

 

As far as input if you would share a little about your tumor like its size we can keep from saying the wrong thing and guide you thru this;

 

Icemantoo

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

Here's the deal. You will handle the post op well because you have already committed to having the nephrectomy and everything that goes with it. I'll bet that if your dr said they had to pull your kidney out through your nose, you would do it. So now knowing it will come out through an abdominal procedure makes it seem much simpler. They give you medicine, you move slowly for awhile, and probably change your perspective on life. We have all been there. The key many of us follow is that life may become a little different but it goes on. Look forward to your recovery and do it with enthusiasm. Besides you get out of shoveling snow in February.

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

Mf,

I remember stumbling onto this forum over thre years ago and being relieved to learn that there were people out there that understood, welcome aboard.  The emotional ups and downs are all a part of the process, yeah, the initiation sucks, but it beats the alternative by a long shot.  If you have an estimated size of your tumor we can give you a bit more help, but know that we are here if/when you need us.

Good luck and Godspeed,

Gary

rochetkak
Posts: 6
Joined: Jan 2013

I am new to this website too, found it after my surgery.  I had a open radical nephrectomy on 1/3/13. I have 45 staples from my diaphram down to my appendix. Don't worry about your pain level the hosital will give you options on how to manage it.  I had a epidural in my upper back for 4 days with a morphine pain pump and they also gave me a shot every 2 hours as needed. I had a tumor 11cm large. There was a 50/50 chance it was cancer so it was easier to take the entire kidney out. I get my staples out tomorrow friday 1/18/2013. I will find out the pathology then.

 

 

Mfbartoli
Posts: 12
Joined: Jan 2013

Wow! Mine will be nothing by comparison. I really AM a baby. Were the staples uncomfortable?

Mfbartoli
Posts: 12
Joined: Jan 2013

Thanks for all the support. You guys are awesome! Ok, what I know is that my tumor is small (20 m, x 24 mm) and is along the anterior aspect. We are taking the whole kidney despite how small it is because it is so close to the renal artery. That is about all I know at this point.Thanksagain for any replies. What a great community!

 

Michele

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

Michelle,

 

At 2.4cm your tumor was caught long before most become problems. The surgery alone should be a total cure although you will be tested regularly because there is a small chance of recurrance.

 

Barring the unexpected you can tell people that you had cancer, not that you have it.

 

 

Icemantoo

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

Hi Michele,

At those measurements its about the size of a grape, very small, and caught very early.  If you don't mind my asking, what led to its discovery, and have they determined that it is RCC or are you waiting for confirmation from pathology after surgery? 

Just curious,

Gary

Mfbartoli
Posts: 12
Joined: Jan 2013

Hi Gary,

Kind of a strange story, but I had a PE Thanksgiving weekend. That resulted in a CT that showed something on my spleen thatmy pulmonary dr wanted to get more imaging on, so he ordered an MRI. That revealed the tumor. So an incidental discovery. I hear that is very common. So the PE was actually a blessing. My understanding iS that my urologist is pretty sure it is RCC based on what the imaging is showin, but will be confirmed after pathology. T1a at this point. 

Cheers!

rochetkak
Posts: 6
Joined: Jan 2013

Yes the staples are a bit uncomfy they come out today at 3pm 1/18/13.

banddinbc's picture
banddinbc
Posts: 13
Joined: Jan 2013

and is doing well,  was in hospital for 3 days and home on the 4th, been up and mobile although sparingly since day 2, Pain has seemed bearable, figuring technices to lay down the easiest and less painful way seem the most trying,  says he feels better just to have it out and gone.  He is mobile with frequent rest stops for now--  onto our chemo in the near future-- seeing oncologist tomorrow for next steps

Mfbartoli
Posts: 12
Joined: Jan 2013

ThanKs for the feedback. That's kind of what I was guessing, the getting up and down from laying down will be a challenge. We'd is the big day. Whoo hoo. I hope your hubby is back to his usual activities soon and good luck with the rest of his treatments.

 

M

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

Michele,

 

By the time the Superbowl comes around you should be up and serving the beers. Good luck Tomorrow.

 

Icemantoo

banddinbc's picture
banddinbc
Posts: 13
Joined: Jan 2013

and Don has had a very positive week,  his energy is good and needs frequent rests-not needed pain meds from surgery for last 3 dAYS

,  thinking of you and wishing you speedy recovery too for your surgery

Mfbartoli
Posts: 12
Joined: Jan 2013

That is really great to hear. Hopefully I will have the same positive experience.

 

Take care!

Mfbartoli
Posts: 12
Joined: Jan 2013

Thanks Iceman! How did you guess that was myfocus haha? I remember sitting in the waiting room with my husband the day I met with my urologist (knowing already that he was going totell me I need the surgery) and saying, "man, this better not screw up our superbowl party". Hears to drinkingclear fluids all day :-)

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

Michelle,

 

By the time of the Superbowl you should be eating all of the healthy food that goes along with the Superbowl  (in moderation).

 

Icemantoo

donna_lee's picture
donna_lee
Posts: 402
Joined: Feb 2009

You just put your big guy/gal panties on and decide you plan to live a long time...and this is how your are going to achieve your goal.  Mine was an open incision for removing the kidney and the various places it had metastacised, so things aren't quite the same.  Drink plenty of fluids (sounds counter productive, because your one kidney will have to filter it all, and you'll need to get up to go pee-frequently), eat healthily, walk when you can.  Then get on with living as a cancer survivor.  And here I am, sliding into 7 years later; but still being tested regularly.

About the staples!  Because they had to go after part of the liver and check other organs, I think I had 67 staples in a 14" incision.  They didn't hurt going in- because I was out.  Only a little uncomfortable trying to move around in bed, but was so doped up that they were the least of my worries.  But the staple puller he used to remove them hurt/stung a bunch.  The RN watched my face and when I started to grimace too much, he'd pause to let me relax.

Good luck on the new phase of your live.

Donna

jtebo1955
Posts: 46
Joined: Apr 2012

I'm a 57 yr old female. I had my kidney removed in Oct 2008..18 months later a CT scan showed thickening of the Esophagus... Cancer! I thought it was rare to have 2 different cancers, but I have read from several message boards this is not the case. These 2 cancers seem to be more common than drs think. 2 years out from esophagus removed. Just think people should know it can happen. Best of luck with your surgery, you'll be sore for a few weeks but life gets back to normal pretty quick.

Copado
Posts: 4
Joined: Jan 2013

I was diagnosed in August with RCC. I had surgery in November (Partial NephrectomyLaparoscopic). I was 5 and a half hours in the OR and 4 days in the hospital. I have had surgeries before, but nothing near this major. The pain in the flank was unreal. I was on oxygen, morphine, Dilaudid, and oxycodone. They tapered these off day by day. When I got out I took Oxy for one day and Tylenol 3 for a week or ten days. My tumour was 5cm and hemorragic and leaking hormones into my system. I went back to work part-time 7 weeks out. Now in week 8, I can honestly say I have never felt better in years. The physical part of feeling great is great but psychological part was huge. I appreciate smaller things in life like a cool breeze, seeing the fog roll in, the sunset on the mountains and of course my dog. I find myself focused on the important things in life and leaving the rest. I was curious as to how your procedure went for you? You should do very well with a small capsulated tumour! 

 

 

Mfbartoli
Posts: 12
Joined: Jan 2013

Surgery was Wed. All went well. Got home Sat eve. The pain while in the hospital was mostly due to the gas build up in my collar bone and shoulder from the laproscopic procedure. I guess this is common and not much they can do to hel relieve the pain. Man was it bad! It seems like they should figure that out from what I now read on on researching. Anyway, got the path back already as well. It was clear cell, margins good. No nodes. Officially "Had" cancer. Whoo hoo! Now just getting back to normal routine slowly but surely. Walking around the house every couple hrs and have an app on my phone to remind me to drink water since it isn't something im naturally good about doing.  Staples come out Thurs. 

 

Anyone have any suggestions for others on how to help get the gas out that causes the pain in the shoulder? Gas-Ex didn't help. Finally had to take another Fleet enima to force it out the bottom.

Cancer Free and Happy to be Home, Michele

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

That's terrific Michele! Keep doing what your doing. The pain sucks but improves. I believe the gas is in your abdominal cavity not your digestive tract. You can't poop it out. It slowly resorbs into your system and goes away. Keep up with follow up appts. I'm hearing of too many people who had kidney cancers and they never have had follow ups. Our beliefs are different now. Now relax, and get well.

Mfbartoli
Posts: 12
Joined: Jan 2013

My urologist has already told me that our follow ups will be scans every 6 months for 2 yrs, then 1 x/yr until I hit the 5 year mark. I have o plans to hide my head in the sand just cause I dodged this bullet. 

Mfbartoli
Posts: 12
Joined: Jan 2013

My urologist has already told me that our follow ups will be scans every 6 months for 2 yrs, then 1 x/yr until I hit the 5 year mark. I have o plans to hide my head in the sand just cause I dodged this bullet. 

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

Hi Michele,

Your initiation to this little club is now complete, good to hear you are home and doing well, I bet it wasn't as bad as you imagined it would be.  I can tell your spirits are up and you have a great attitude, that's half the battle.  The gas/shoulder pain is normal and goes away on its own over a few days, I found that walking more seemed to speed up the process.  The cell phone reminder is a neat trick and water is the best medicine you can take right now.  In a couple weeks you'll be wondering what all the fuss was about.

Hang in there,

Gary

Susieemma110's picture
Susieemma110
Posts: 2
Joined: Jun 2012

Just read your message and you've had your surgery. Hope you are doing well. I had a radical nephectomy June 26, 2012. Very hard surgery but every day post-op got a little better. I'm doing well physically but still feel the emotional pain of having a devastating diagnosis and subsequent treatment. Everything seems to be catching up to me now. My pathology report was good in that the cancer was contained but still feel afraid. I'll have to be screened every 6 months for now. Not sure if this fear will ever go away. Good Luck.

2013-01-28

Mfbartoli
Posts: 12
Joined: Jan 2013

Thank you for your message. It is scary. I don't think even though I no longer officially HAVE cancer I will be able to not think about it that way. Good luck to you as well. 

Susieemma110's picture
Susieemma110
Posts: 2
Joined: Jun 2012

I agree. Although i suppose that i don't "officially" have cancer any longer, I'm still lreeling emotionally. My life has changed so moch. Ithink that fear will never go away but maybe get a little easier. I'm afraid to let my guard down. It helps to be in contact wih people who understand.

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

Michelle,

Now that the surgery is over how about the Superbowl. With a daughter and 3 granddaughters in Baltimore I guess I know who I am going to cheer for.

I plan on watching the game on Spanish ESPN somewhere South of St Thomas. I am taking the Icewoman on our 11th annual Southern Caribbaen survivor cruise.

Icemantoo

Mfbartoli
Posts: 12
Joined: Jan 2013

Good for you! Sounds like a blast! I'm a west coast gal, so since my Seahawks couldn't pull it off, will have to root for SF. It is mostly just a big family football fest regardless of what teams end up playing each year. We are all in a fantasy league (I happen to be in the lead at the moment yipee) and put a 100 square pool together. So glad I won't be stuck in bed. Feeling better each day. Heading out today to get my INR checked (remember this all started cause I had a PE).

Enjoy your trip! Hope the game is fun to watch in Spanish :-)

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

Michele,

 

I can't stand the train noise anytime I go by your 2 new stadiums. With a brother in Issaquah and my 91 year young mother in Bellevue we have the Seahawks covered as well. What a Fluke,  Did see a basketball game with our Pistons a few years ago in Key Arena before your team snuck out of town.

Just trying to keep your mind off that wicked initation you had last week.

 

The game on the Spanish ESPN we watch is in English, except for the adds which are all Spanish.

 

Icemantoo

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

This Southern Maryland girl says 'WOOHOO!! RAVENS ALL THE WAY" When my Dr called to schedule my surgery he said it would either be Feb 1st or 8th because he had to check with his partner to see when he would be available...I was soooo glad he called back and said the 8th because I totally did not want to be gorked out on Pain Meds when my boys are kicking butt in the Superbowl!

Iceman, I hope you two have a wonderful, fun filled relaxing trip!

Michelle, I am so glad everything went well for you. My first bout with this was found when I got up to pee and filled the toilet with blood. That tumor in my left kidney was 7-8cm and luckily was still encapsulated but it was a close call.

These 2 tumors in the right kidney were found like yours...I have severe back pain, numbness in my legs and feet and horrible cramping in my legs and feet also. I have a really bad time trying to walk on hard surfaces or go up and down steps or stand for a long time like washing dishes. Unfortunately I have been dealing with this for several years. Because only a small herniation at L 4-5 shows up on an MRI I can not find a neurosurgeon to operate on me. My Primary Care Dr, My Pain management Dr and my Neurologist are all totally frustrated because I have such text symptoms for nerve impingment in several areas of my Lumbar spine.So in September my neurologist and I decided we were going to do a myelogram/CT of my spine and see if we could get some really good pictures this time. Then he is going to take the results before a panel of 6 Drs and hopefully then someone will do the surgery. So that is what we did and thankfully finally everything lit up like a Christmas tree this time...there is no question at all now how bad things are in my back...yippee but the 2 tumors in my kidney showed up too. When my primary care Dr got the results I got a phone call that I needed to come in and see her asap...So I did and she told me what the report showed and sent me for an US of my kidney which confirmed the two small tumors. The US report recommended a CT asap to confirm and clarify the tumors.I had the US the day before my husband left for our cabin in VT for 10 days over Thanksgiving holiday. Primary Dr was working on getting the CT set up for right after I got back. I wasn't feeling very well the weekend after Thanksgiving and by the time we hit the NJ Turnpike I made my husband stop at every rest stop...it was a horrendous 12 hour ride home. I stayed in bed most of that week and by the weekend I was feeling better. So I spent the weekend at my parents home with my sister packing and sorting through my parents life. My Dad died of Pancreatic Cancer May 8 and my Mom died 7 weeks later on July 1. Started all over again Monday and by Monday night I had a temp of 102.8. I couldn't keep anything in either end. Tues AM went to Primary care Dr ho sent me to the ER. I was one sick puppy. As part of my ER Evaluation they ordered an abdominal CT so I told them about the Tumors and they included them in the CT Exam also. I was admitted to the hospital with severe diverticulitis and stayed for 5 days..they also told me the CT was definitely positive for 2 approximately 2 cm tumors that were 99% RCC and appeared to be encapsulated. They sent a Urologist to see me while I was there and then I saw him in his office as soon as I got out. He referred me to Dr Hwang at Washington Hospital Center.I really didn't have any option except surgery or death...so I am scheduled for a partial nephrectomy done Robotically on Feb 8. Yesterday I happened to notice something someone had posted on my FB wall several months ago and I had saved it..it literally jumped off the wall at me "It said  Sometimes God causing delays in our travels because he knows there is a Storm where we are going"...It brought everything into clear prospective for me...all the delays, the refusals of surgery in the past two years was God delaying my Travel and the Tumors were the Storm...If I had that surgery two years ago my back would probably be great but I would not have needed that myelogram/CT that showed the tumors and I wouldn't be on here yakking because I would have no idea I had cancer again...

Susie..do your follow ups regularly. The fear will go away but you have to go out and live the best life you can because you have been given the amazing gift of a second chance. Focusing on the fear will only keep you from enjoying that gift to the fullest. It is my understanding that cases like mine of reoccurance are rare..I had a greater chance of it happening because we believe that my RCC is genetically based. So go out there , kick up your heels, and plunge into life with all you have!!

 

banddinbc's picture
banddinbc
Posts: 13
Joined: Jan 2013

your finished the surgery and good news--I forgot to mention about the gas but that was yesterday!  Now for tomorrow-speedy recovery  :)

 

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