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APny's picture
APny
Posts: 216
Joined: Mar 2014

Hello, I’ve been trying for ages to open an account here and never got a password or notification yet it kept saying I was a member. So finally after opening a third email account (since it thought I was a member it kept saying that email address is already in use) I got a password. I just want to say that I’m in awe of all of you; so strong and gracious and helpful. Thank you for all the information I’ve been able to get by reading here ever since I got my diagnosis. I’ve no idea how to “tell about me” so couldn’t do that.

In a nut shell, I’m a woman in my early 60s and I have a 3.4 cm tumor on my left kidney. I’m having open partial nephrectomy on Monday at Sloan Kettering and I’m terrified. Terrified of the surgery, the pathology results, the possible recurrence and mets, the pain, infections, you name it, I’m terrified of it. I’ve never had surgery in my life and have never been in the hospital except once when I passed out and hit my head so they were observing me. Please talk me down from the ledge; and I feel really embarrassed for being such a wuss when you’re all dealing with things so bravely. I’m so sorry anyone has to be here but at the same time, thank you for being here to help everyone.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

APny.. first of all welcome to a place you never wanted to be.. next, big time cyber HUGS..!!  Anyone who hears those three words and says they are not concerned is likely lieing.!  Scared, nervous, anxious, sleepless, yes join the crowd..  My radical nephrectomy was my first surgery at 59 years of age..  I was terrified..!  But then I had not found this WEB site back then.

BUT in reading what you wrote, your tumor is small.  Small enough that the surgey may end up being the last treatment for Kidney Cancer.  We all hope and pray..!  And Sloan Kettering is frequently mentioned as being a top notch hospital... so it appears you are in great hands..!

The fear is far worse than the reality... if you have no other health issues, then you should be fine..  There may be some pain post surgery.. as soon as even the slightest pain shows up, call for the drugs.!!  Yes take the drugs as needed..  Rest up post surgery, it can take 6 weeks or more to heal up.  And even when you feel great at 3 or 4 weeks, your inside is likelys till healing... do not lift anything heavy for a long time..  

Holler at us any time you wish..!  I may be the first to reply, but there will be a bunch more...

Ron

APny's picture
APny
Posts: 216
Joined: Mar 2014

Thank you so much, Ron. I feel like I know you and everyone, I've been reading here since January. I think I'm in good health and I use the treadmill every day so that should help too. I'm just so scared I'm ready to throw up every time I think of Monday. Cyber hugs back at you :)

icemantoo's picture
icemantoo
Posts: 1592
Joined: Jan 2010

AP,

 

My neighbor Faye across the street (our dogs are friends)  had her diagnosis and surgery at age 64. She is 83 now. Mine was 11 amd 1/2 years ago at age 59. I will be 71 this summer.

When Faye or anyone else got Kidney Cancer it was always what someone else got. What normal person just before or after reaching age 60 would ever have Kidney Cancer.

Well now you and I know it can happen to anyone including ourselves.

As far as your diagnosis and prognosis you should be fine. There is no way to sugar coat the surgery, but it sure beats the alternative. If that tumor had grown and spread the journey would be much more difficult.

Scared? Who wouldn't be? But that too shall pass.

Icemantoo

APny's picture
APny
Posts: 216
Joined: Mar 2014

Thank you so much everyone. I love how you all reach out to others and support them; I really appreciate it. Iceman, so true. I'm 61 and the first thought I had was "who the heck gets kidney cancer?" I never knew anyone who had it; I really was in total denial at first. Then angry. Now I'm scared and angry, lol. I guess what really scares me is how for so many people it comes back. It's not like after the surgery you're done with it. I'm just so afraid the surgery is the beginning instead of the end of it like it would be with a gall bladder removal or appendectomy. I don't know how to shut my mind off so it's stop the horror movies.

icemantoo's picture
icemantoo
Posts: 1592
Joined: Jan 2010

Ap,

 

At 3.4 cm the chance of recurrance or spreading are few and far beteewn. Even if that were to occur the scans will catch anything in the bud. Now lets get the surgery behind you and a full life ahead.

 

Icemantoo

APny's picture
APny
Posts: 216
Joined: Mar 2014

Thanks, Iceman, from your mouth to God’s ears :) Darron, did you have laparoscopic or open? I hear that gas pain issue is worse with lap since they have to inflate you. Or can I expect that with open as well? A_oaklee, my husband is like you; he’ll be there to hold my hand and nurse me through this, thank God.

Were most of you able to sleep in your bed, shower, use the bathroom ok without too much difficulty? Did you need help? There are so many stupid little details I worry about besides the obvious big ones. Also, and this sounds really shallow but I worry about shared rooms and all the visitors coming and going coughing and sneezing. I’m scared to get sick on top of all this. My surgery already had to be postponed because of a bad chest cold. You’ll all get sick of me and my neurotic worries, lol.

And realistically speaking, how long before I can do some cooking and food shopping etc.? I'll really miss doing the everyday things. I don't want to rush anything but after a while I'll go bonkers not being active. I'm on medical leave from my job (I'm a teacher) so I don't even that.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

AP. I had an open and had plenty of gas.  It was no problem for me at all.. but it WAS a problem for anyone entering the room..!  As the nurses kept telling me (after I asked them to leave), "Let 'er rip..!!"   So I did... lots of it..!!   And again, it really seems like your little pal was found early.  And anywhere you read about Cancer, early detection is key to a happy result...

Ron

APny's picture
APny
Posts: 216
Joined: Mar 2014

One putt, if I could go out to dinner in a week, I’d love it! I so hope I can say it was a piece of cake. I do have a great surgeon (or so I hear), Dr. Russo, so I have faith in his skill.

Jack and Ron, I guess gas is a good thing; it shows everything woke up from anesthesia and is working as it should be J I’m not sure I understand why there should be gas issues if they don’t pump you full of air for the open surgeries.

I guess what I call normal is just being able to shower on my own without help, go upstairs, sleep in my own bed (which is unfortunately upstairs, lol), do food shopping and make dinner, small things. I don’t intend to lift anything so my free weights will have to wait a few months. I intend to walk as much as possible but hoping it can be done without much pain.

Thanks everyone, you’re really making me feel a little better. Jack, lol about that zipper tattoo.

APny's picture
APny
Posts: 216
Joined: Mar 2014

Okay, this is weird. There were posts by Iceman, Rae_Rae, and now showing that last response is by Fox but they're all gone and I can't see any of them, including the new one by Fox. Anyone else notice odd things happening with this board and posts?

icemantoo's picture
icemantoo
Posts: 1592
Joined: Jan 2010

Occassionaly posts are removed as offensive, political or for solicitation etc. But none of that explains this and the order of certain posts have been changed. I know CSN has been doing site maintenance recently but this is wierd.

 

Icemantoo

Srashedb
Posts: 198
Joined: Dec 2013

I think there was some work on CSN and I too had problems with posts. Seems ok now.

Sarah

icemantoo's picture
icemantoo
Posts: 1592
Joined: Jan 2010

For what it is woth I emailed and reported this to CSN.

Icemantoo

JoanneNH
Posts: 57
Joined: Sep 2013

Is there soemthing wrong with the web site?   I have been following a couple of threads and the dates are not in order.  For example, a most recent post is right in the middle of older posts.  Aren't they put in order from starting with the oldest to the most recent?

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

But if you respond to a specific post it should come up right after that specific post. Like this one should. But not always.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

I don't think I wrote anything offensive. I think that what I wrote was to look forward to your surgery. As it is the best thing that you will ever do for yourself and your family. Then said that I was in the hospital recovering from my surgery 3 years ago today and I remember it as though it was 3 years ago today. Maybe someone doesn't like my humor?

ConnieSW's picture
ConnieSW
Posts: 608
Joined: Jun 2012

Actually, something posted by Greta today has disappeared.  Maybe blame The Twilight Zone?

Skagway Jack's picture
Skagway Jack
Posts: 79
Joined: Oct 2013

Apny.  I had an open full nephrectomy.  My experience was I had difficulty getting rid of the gas....but after a couple of days it left the usual way and I felt much better.  I slept on a recliner for about 2 weeks, mostly because it seemed the easier way to do things.  I had a 9 inch incision that I now refer to as the "freak show".  I keep saying that I intend to tatoo a zipper pull at the top of it.  Who knows, with a enough liquid encouragement  it could happen.  Anyway, I walked every day, including the day of the surgery. As far as normal everyday goes I would say that depends on what you call normal. I would say I was 85 percent at about 3 weeks and 90 percent by 4 weeks.   I felt almost 100 percent about 2 months out.  I now have occasional minor back pain and numbness in the suture area, but I honestly feel I have dodged a major bullet so over all I couldnt be happier. 

The Dr. will not want you to lift anything heavier that 10-20lbs for a week or two, but cooking is not a problem as long as your not making big pots of stew or chili.

A friend of mine brought me a model ship (of the kind I served on in the Navy) a day or two after I left the hospital.  He thought it would be helpful to keep me busy while I recovered.  Naturally I was keen on the idea, and needed to immediately go out and buy some paints and supplies.  This little foray to the Hobby Lobby, about 1.5 hrs,  was a workout.  It impressed upon me that this was a process and to not bite off too much too quickly.  The model followed my progress nicely and I finished just in time to return to work. The model now sits on my cabinet at work.

Good luck, I am sure you will do great.

one putt
Posts: 72
Joined: Sep 2012

Sorry you had to join our group. I had a  right radical nephrectomy laproscopic, with a  6 inch opening to remove my tumor. I had a great surgeon  at a great hospital (Hopkins) . I spent one night in the hospital, slept in my own bed, and needed no assistance using the bathroom. I had shoulder pain a couple days after the surgery lasting about 2 days, which I'm told is common with lap surgeries because gas from the surgery tends to settle there. The pain was easily managed with the tylenol with codeine I was sent home with. My only issue was I was limited to the amount of steps I could do, so I was pretty much confined to one floor the first week. My surgery was Nov 1, 2013. My wiie took me out to dinner on Nov 7 and on Nov 10 I drove approximately 50 minutes to represent a client in court. My only previous surgery was a tonsillectomy when I was 7 years old. Like you, I was plenty scared before surgery, but now I refer to it as a "piece of cake". Best wishes for a successful surgery. You're at a great hospital and I'm sure you have a great surgeon. Hopefully when it's over you'll be on here telling the newbies it was a piece of cake.

Darron's picture
Darron
Posts: 224
Joined: Jun 2013

Sorry, I missed the question to me and caught it on a re-read if the string. I did have a hand assisted laproscopic. Yes, that makes the gas pain quite a bit worse. 

a_oaklee
Posts: 174
Joined: Nov 2013

Hi.  I'm glad you found your way to be able to post on this site.  I know it's all scary and you have anxiety.  My husband went through the surgery like a champ.  I will share with you how he did it.  First, experienced doctor and great hospital.  You have the same thing by choosing Sloan Kettering.  They will take great care of you.  Next, he had me to help him.  Haha.  It's nice to have someone just to hold your hand or listen.  He stayed very busy with his mind occupied prior to the surgery.  Remember that you won't feel a thing during the surgery.  You will be asleep.  Also know that nurses and doctors want you to be comfortable.  You will get medicine for pain, and whatever else you need.  If you need more, ask.  Try to be a cooperative patient by moving, walking, coughing, sitting in a chair...whatever they ask you to do.  It's all to help you.  Before you know it, you will be discharged to home and you will wonder why you were so worried about the procedure.  Know that your tumor is small and this surgery is most likely all that you need.  Take things one day at a time to the best of your ability.  We are all here for you.  Write as often and about whatever you want to write about.  Lots of great help here.

Darron's picture
Darron
Posts: 224
Joined: Jun 2013

There is no need to week like you are a "wuss". I promise you that all of us have been terrified. I remember praying with my family ( I have 2 boys, 14 and 11 at the time) the night before surgery. I was amazed that I actually got thru our prayers without completely breaking down. It is difficult to convince yourself that you are going to be OK. There will be pain (my worst was from gas in my abdomin), but day by day, you will feel better and stronger; little by little. You are talking to 1,000 or so people that have demonstrated it Can be done, there is no reason to be afraid. Be energized that you will again be healthy soon.

Fear grows if you let it. You need the surgery to eliminate your cancer. Don't think of it a a risk to your health, think of it as a need for good health. You should look at your surgery as a re-birth of sorts. You will soon be a cancer survivor! Think positive and positive things happen.

take it slow and steady after surgery. Walking helps get the gas out if your System, and drink plenty of water. You will be back to "normal" bedore you know it.

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

Hi AP,

Just wanted to say welcome to the club, BTW the initiation sucks, we've all been through what you are experiencing and we're here to support you or listen when you just need to vent. Its been over four years for me with a tumor slightly larger than yours, this will be easier than your imagination lets you think, take e few deep breaths and repeat after me...I WILL BE FINE! Keep us posted.

Good luck and Godspeed,

Gary

icemantoo's picture
icemantoo
Posts: 1592
Joined: Jan 2010

Ap,

 

Hopefully the surgery is over and your siping on a Shamrock Shake and by the time the week  is over something more refreshing as well.

Icemantoo

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

Hi, I'm about 5 weeks out from a robotic laparoscopic partial nephrectomy. A little over 2cm tumor on left kidney. I am 38 and I just went back to work full-time last Thursday. I did have pain with the gas settling in my right shoulder and getting a bladder infection from the Foley Cath.I would have gotten out the next day after surgery but because of the gas and ITI, I had stay in the hospital one more day. Though other than that it wasn't too bad. I too slept in a recliner because it was easier to get up from. I also took my pain meds. I am still swollen and feel bloated. I get tired at the end of my work day but all in all I feel pretty good. Good luck with everything. Your in good hands here! Everyone is very nice and extremely helpful.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Kerrie, that seems like a fast 5 weeks. Glad you are getting on. Good for you. You look like Fiona from the show Burn Notice. I'll bet that is the first time you've heard that....today.

kerrie75's picture
kerrie75
Posts: 20
Joined: Feb 2014

No, I haven't been told that. I have to check out the show. I've never seen it. Yes, it has gone by really fast. It seems like I was just sitting in my Dr.'s office being told I have cancer. Now I just have to wait until September to get my 6 month scan. 

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