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Daisy lo's picture
Daisy lo
Posts: 11
Joined: Mar 2013

Hi, I'm new here and on Feb 10, 2013 I found out i have a 20cm tumor on my right kidney. On Feb 12, 2013 I found out it was stage 3 cancer. I'm scheduled to have an open radical nephrectomy on Monday March. 11,2013. The tumor is attached to my Inferior Vena Cava so they will be taking part of my artery, along with everything else. My cut will go from 6 fingers below my last rib up to my breast, diagonal across the middle then down my left side...my Dr. described it as the "chevron" sign under my breasts. I'm 33, the single parent of 12,8 & 2 year olds, and am expected to be in the hospital for at least 1 week. I've been doing lots of research and everything I've read has me horrified of the pain I'll feel after the surgery. Does anyone have any tips for the first few days after surgery? The Drs told me that I'll have a g tube in my nose down to my abdomen to remove gases, that i have to breathe 10 deep breathes n 2 coughs in the recovery room before i can get transferred to my own room and a button for morphine that i can push to medicate myself, and that on day 2 I'll be expected to get up n walk....I'm terrified but can't show it around my kids & family because they're taking it worse than me. I'm glad i found this group, I'm sure someone here understands how i feel. 

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Welcome Daisy. Sorry for your need to find us. But, glad you did. Your upcoming surgery is scary. But it appears that you are ready. The pain is real. And I have heard lots of others who were very afraid of it. But when considering the options (which are few) it is quite tolerable. Don't let it put you into a panic. They  will medicate you. Use it. It's not like you fell off a cliff in the woods and no one could help you. If your Dr. told you that they had to go through your nose and pull out your kidney with a pair of pliers, I bet you would say ,"Do it." "Get it out!!!" Well, they don't do it that way. Your incision will heal. You will get help to move and you will get the "good" stuff. As much as you need. So take it. After a couple days or so you need less. You start moving around and start getting anxious to go home and see your kids. The pain is a small price to pay. Keep us posted when you feel up to it. Good luck.

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

Daisy,

You will do fine. It will be painful but you will get through it. I had the big slice, chevron style much like you have described. I had an epidural instead of morphine in the hospital and it blocked most of my pain, but not all. Getting out of bed was very difficult but I pushed myself to do it the day after surgery. Walking is really good for the healing process. I moved very slowly but mainly because I couldn't breathe as I had complications with my lungs filling with fluid and spiking a fever for four days. As much as it hurts to cough, you have to to keep that from happening. Use a pillow to cover your incision when you cough or sneeze. I used a wedge for my bed at home as it was difficult to be flat. Many others have slept in a recliner. You will be extremely fatigued. This is normal. Take it slow, keep moving and eat very small portions as it will be painful if you don't. You will also be constipated...make sure you have something on hand for that. I started gentle swimming at three weeks and it felt wonderful, mostly on my back as it felt the best. Stay on top of your pain...don't let it get out of control. Best of luck to you tomorrow...you will do great. Oh and get some help at home! No heavy lifting for at least 6 weeks! (nothing over 10 pounds).

Rae

PK_Chicago
Posts: 29
Joined: Mar 2012

I was diagnosed with a 14.5cm tumor when I went in for a CT scan for an unrelated issue.  It was removed and during my hospital stay - if they said you can sit in the chair - I'd get up and sit in the chair, if they said stand - I stood, if they said walk - I'd walk!  When you are in the hospital you'll walk the halls and see the nurses trying to convince people to get up, sit in a chair, etc.  DON'T BE ONE OF THOSE PEOPLE!  This is the hand you've been dealt - you have to deal with it!  Also - be strong for your kids and family - it helps them a great deal!

My rule was and is "no pity parties!" - you have to take each step as it comes!

 

Good luck and visit these discussion boards often when yoiu are home recovering - it helps a great deal!  You'll probably feel very alone - there aren't a whole lot of people who will know what you are going through!

But there are here...

 

PK

 

Daisy lo's picture
Daisy lo
Posts: 11
Joined: Mar 2013

thank you to the 3 of you.  It is now wed 3rd day since surgery and im doing good.  Surgery was monday at 745am it ended right about 1pm.  My pathology report came back today, my tumor weighed 5 pounds!!!! But thsnk God they ended up not.taking my artery.They took the tumor n my kidney n lymph nodes n the report today said that the cancer was encapsulated in the kidney n tumor only....SOOO IM NOW OFFICIALLY CANCER FREE. Im having a little issue with my right lung sounding crackly n not breathing as good.Ive been up walking since day 1...still surviving off of ice chips since saturday  night. Well time to walk im still at.the hospital 

 

 

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

I so incredibly excited about your good news...keep up the good work and remember to rest if you need too also...that was and is the hard one for me right now...!

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

Congrats, Daisy!  We're so glad you're recovering well and have found us.  Maybe your 'silver lining' is you weigh 5 lbs less now.  Keep walking and keep us updated.

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

WOW!!!!!!!!!!!! You've officially had weight loss surgery! Move slow, get well.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

That's great news. When I first read 20 cm, I thought OMG. Now look at you! I really am happy for you!

justsayin's picture
justsayin
Posts: 15
Joined: Mar 2013

Daisy Contratulations on your outcome!   Wow, 5 pounds!  What did you name it??  :)

Hug your kids Daisy and enjoy life!

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Nice to hear you are doing as well as you are,you seem to be one tough woman.

angec's picture
angec
Posts: 621
Joined: Mar 2012

Daisy it sounds like all went great! Glad they said it was encapsulated! What a relief!  5 pounds? Wow.. glad to get that out right? LOL  Be sure to follow up with the oncolgist for good measure!  Be well.. hugs to you and the little ones!  xxoo

Daisy lo's picture
Daisy lo
Posts: 11
Joined: Mar 2013

Hi everyone, hope everyone is good. Two weeks since surgery and tuesday the 38 staples come out...hate that its going to be by an lvn and not my dr. I dont get to see my Urologist until April 17 since before my release from the hospital...is that normal? My dr said I could return to work April 1st, only 3 weeks after surgery, at 2 weeks im still in alot of pain and hardly eating. I am a private nurse for a devolpmentally disanled adult who needs full care, i dont think i can pick up my 2 yr old let alone my 28 yr old patient. 

Im very grateful to everyone for the support, I now joke that my tumor was my last baby...being born March 11,2013 at 10am with measurments of 21x18x15.5cm and 5lbs, he was named RAIDER and was of a rubbery grayish/yellow color. 

So I know the numbness in my tummy is normal but what about the pain around my belly button? I wish i could share a pic of my beautiful cut with everyone lol, its my new pride n joy since it practically saved my life. 

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

There's nothing to stop you replacing your pic with one of your new battle scar - others display them, like our firefighter flatlander - but I'd rather you kept that lovely portrait.  We have so many film stars looks on this forum, and then there's Fox!

Do you think maybe your doc meant April 1st 2014?! Does he have any idea what you do professionally?  April 1st 2013 is totally ridiculous - it would be even for a tough guy with a small tumor, still more so for a young lady of a normal size who hasn't been eating and is still in pain after removal of one of the most colossal renal tumors any urological surgeon ever gets to see.

I hate to give you more bad news, but you really mustn't even pick up your 2 year old for quite a while yet - nothing more than ten pounds is a general rule of thumb.  I know that will be very tough but you owe it to yourself and your Family not to compromise your recovery seriously by herniating or re-opening wounds or ....  you're a nurse, you know better than I do.  The thought of putting your back at risk in looking after your patient is, in itself, unthinkable.  I think your doctor is talking like an idiot - please get a further qualified opinion on when you are sufficiently recovered to resume an intensively physical lifestyle. 

Our illustrious friend Fox would be ideally equipped to give you the advice you need.

 

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Damn papparazzi always trailing me. So, I'll continue with my "Wild One's " photo. What you can't see is that by my feet is Marlon Brando and Lee Marvin. Tough guy image must remain. My "pretty boy" portfolio will remain with my swimsuit covers.

Daisy, A return to work by April 1st wouldn't be a good idea for a telemarketer, let alone a health care professional with direct patient contact requiring lifting, positioning, and transfers. 3 months would be more realistic. For a 200# man. Your job as a young mother is enough to push your limits for a couple months. Your attitude appears excellent. Let your body catch up. Either your Dr doesn't understand what you do or he/she is completely misinformed. Take your time off to love your kids.

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

I knew you'd come through with professionally qualified advice for Daisy and also the usual entertainment value for the rest of us! (By the way, please don't think of giving up the day job to concentrate on your swimsuit portfolio, although I'm sure some of the pics are wild ones.)

Daisy, please do take note of Fox's advice - he knows well whereof he speaks.

 

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

But I'd take pics of Daisy in a swimsuit over you any day!!

Eims's picture
Eims
Posts: 418
Joined: Feb 2013

Daisy you will love it here!!  Congratulations on getting through the surgery......you can get through this and be a stronger person because of it.

Eims x

icemantoo's picture
icemantoo
Posts: 1526
Joined: Jan 2010

Daisy,

You are going to feel a lot better a week from now when you are 3 weeks post surgery. Still too early to back to work unless it is a part tie desk job. I think given your surgery you need at least 6 weeks off and than you may or may not be able to return full time at first.

 

Icemantoo

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

Congrtas Daisy! The bravery you show inspires me! Hang in there for yourself and the kids!

 

Daisy lo's picture
Daisy lo
Posts: 11
Joined: Mar 2013

Thanks everyone. I got the 38 staples removed yesterday, and now I feel alot of pain.  Its really irritating to feel this way today, I feel like the first day of surgery again. And emotionally Im drained, everything is making me cry....I think the time in bed has me feeling kinda useless. Ive been home alone since my first day home from the hospital, this week my 2 older kids are home and I can't even get up to make them food. My 12 yr old is making breakfast, lunch and dinner(thank God I have a great kid), hmmm I feel bad. 

I keep reading that the cancer comes back in alot of people, and even though we're pretty sure i had mine since 2004 (after reviewing my medical records) it seems like my battle was too easy, and im worried it will come back stronger. How common is the return of our cancer? 

 

BDS's picture
BDS
Posts: 94
Joined: Aug 2012

 

"I keep reading that the cancer comes back in alot of people, and even though we're pretty sure i had mine since 2004 (after reviewing my medical records) it seems like my battle was too easy, and im worried it will come back stronger. How common is the return of our cancer? "

I hate to sound morbid but I view Kidney cancer as the Terminator’s of cancer’s … it always say’s “I ‘ll be back!” You will need to be vignette the rest of your life. I have read stories of Kidney cancer coming back after a few years to decades later. The record is supposedly 40 years. Your oncologist will give you a time table about when you should be scanned. Sometime in the future you may only need to have a blood test. But right now please give yourself time to heal and to be incredibly thankful that your 20 cm tumor did not spread to stage 4. Because believe me the worse day of my life is when my surgeon told me you may only have a year to live. Please take care and enjoy the rest of your life. - BDS   

Daisy lo's picture
Daisy lo
Posts: 11
Joined: Mar 2013

Thank you and Im sorry that you heard those words, I cant imagine what that feels like. Hopefully it will be years before it returns...at least long enough for my kids to be grown. You mentioned blood work, my blood work never showed anything, until the radioactive stuff got put into my vein. 

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

One thing at a time Daisy so try focussing on your recovery for now and follow your doctors orders.Yes i am one of the unlucky ones to have a recurrence of RCC,but then again my scan from last week came back normal with that said everyone is unique in their situation so yes there is a good chance you will live a long and happy life and never have to deal with this cancer again,so for now smell the roses and be thankfull.

Daisy lo's picture
Daisy lo
Posts: 11
Joined: Mar 2013

Wow you had a reoccurence, that is a scary thought for me. Im very    glad your scan came back clear. Yes im concentrating on getting better as a matter of fact today I drove myself to the nail shop...the Dr said 2 weeks before driving and its been 2 1/2. Plus I needed the pampering, but i regretted it afterwards when I felt the pain, at least my hands & feet look good. 

Eims's picture
Eims
Posts: 418
Joined: Feb 2013

Daisy here in Ireland you are not allowed to drive for 6 weeks post op!!!  Its a legal requirement.  Please don't overdo it just yet....take time to rest and heal and try to relax, hared I know with young children but  try your best.

Eims x

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

about 7 months after my surgery, my first oncologist told me that I probably had only 5-6 months to live. It is now a year past that. I keep improving and may never be cured but everything is manageable. I am strong, healthy, and keep up with my scans and appointments. What has happened cannot be reversed, so accept it. Concentrate on getting well, loving your kids and enjoying life. Stay on board and learn about the drugs and trials that are and will be available. You will be well armed should the time come. Me, I got lucky. You can be much more prepared.

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Hi Eims.. I keep forgetting to ask.. are you in the good part of the southern part of Ireland..??  Cool

Be Well...

Ron

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

Careful, Ron.  I don't know how much you know about Ireland but Eims might come back with the apocryphal question 'But are you a Catholic Jew or a Protestant Jew?   Wink

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Hey TW...  ya just gotta laugh sometimes..!  But then.. the pals I know from "over there" are all up north..  They are Road Racers and are a fine group..!  One of these days I need to get there during the races... it is on my to do list..!

Be Well All..!

Ron

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