ccRcc diagnosed 08/03/2012
I was diagnosed August 3rd with a large mass on my left Kidney 10cm, and ever since then it's been a confusing ride of tests, guesses, and assumptions. I have been trying to learn everything I can about this disease. It's not looking pretty from the Internet reads.
It appears that the cancer is restricted to the renal area. The PET Scan came back only showing that left kidney. The Doctor "seemed" to be happy with that scan result, but to be honest, he does not say much.
They determined they need to get that sucker out of there, and I am scheduled for a radical kidney removal tomorrow morning 11:00 AM. As I understand it, the game plan is to do it with laproscopic surgery, unless a condition on the fly mandates open surgery.
Frankly I am terrified, but put on the "no problem face" in front of the kids. Being a single Dad is hard enough without this complication. Not sure if I am more worried for me or for them. Probably both.
Since Dads are not suppose to whine in front of their kids, I guess I am doing my whining on here.
Comments
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A burden shared
And here is a good place to do it. Good luck tomorrow. Take the pain meds on schedule, expect a couple of rough days. Start moving and taking on plenty of fluids as soon as is feasible. Report back here as soon as you feel up to it and collect your spurs. Not long now to have your Club membership confirmed.0 -
Best wishesTexas_wedge said:A burden shared
And here is a good place to do it. Good luck tomorrow. Take the pain meds on schedule, expect a couple of rough days. Start moving and taking on plenty of fluids as soon as is feasible. Report back here as soon as you feel up to it and collect your spurs. Not long now to have your Club membership confirmed.
Joe,
Hope things go smoothly. Know that you have a group of friends here who will be thinking of you and anxiously awaiting to hear from you afterwards. Like Texas_wedge said, get plenty of fluids and get moving as soon as possible. Welcome to the club.
John0 -
You can do this!
My wife had the same surgery exactly one week ago. The first couple of days are tough, but not dreadful. I would say she is almost 60% today just a bit short on energy.
You are in our prayers and you WILL get through this. I know exactly how you are feeling and its very easy to get into a negative state. You have every right to whine BTW.
Tom0 -
Good luck tomorrow...
Hi Joe,
What you are feeling is all completely normal and I'll bet getting it off your chest has made you feel a bit better all ready. We understand and we're here for whatever support you need, even if its just some place to vent. There are many members here with tumors larger than yours that are doing fine and you are going to do just fine as well. Your kids will be your strength and you are about to learn that they are stronger than you think they are. Very soon this will all be behind you and you can get back to the important things of life. Let us know how things turn out when you can.
Good luck and Godspeed,
Gary0 -
Appreciated
Thank you all for the words of encouragement. To be perfectly honest, I needed them.
I am happy to have found this place, it's a far cry better than so many of the doom and gloom web sites I have stumbled across since I learned of this disease.
I have to be checked into the VA Medical Center at 9:00 am for surgery at 11, so this is likely to be a very long night of nerves. I spent most of the day working, and that helped keep my mind off it. But sooner or later night falls and that is the time your imagination weights in on the what-ifs, and how-comes. But I would guess you all know these things already.
I am still waiting for someone jump up to say April Fools, but then I realize it's August. It's still kinda surreal to move from discovery to surgery in not quite 30 days. Does that rapid progression seem normal/common to you folks?
And even after getting over the surgical hump, I understand it's just the beginning of the journey as you wait on the pathology report to determine type and grade which defines just how far up the screwed meter you push the needle. Perhaps that is a bad way to phrase it, but I am attempting to keep some semblance of humor. There is so much I don't know yet.
And at this point I am apparently rambling, so I should stop and simply say.. Thanks for the encouragement folks.0 -
Diagnosis to surgery time...Joe_fh said:Appreciated
Thank you all for the words of encouragement. To be perfectly honest, I needed them.
I am happy to have found this place, it's a far cry better than so many of the doom and gloom web sites I have stumbled across since I learned of this disease.
I have to be checked into the VA Medical Center at 9:00 am for surgery at 11, so this is likely to be a very long night of nerves. I spent most of the day working, and that helped keep my mind off it. But sooner or later night falls and that is the time your imagination weights in on the what-ifs, and how-comes. But I would guess you all know these things already.
I am still waiting for someone jump up to say April Fools, but then I realize it's August. It's still kinda surreal to move from discovery to surgery in not quite 30 days. Does that rapid progression seem normal/common to you folks?
And even after getting over the surgical hump, I understand it's just the beginning of the journey as you wait on the pathology report to determine type and grade which defines just how far up the screwed meter you push the needle. Perhaps that is a bad way to phrase it, but I am attempting to keep some semblance of humor. There is so much I don't know yet.
And at this point I am apparently rambling, so I should stop and simply say.. Thanks for the encouragement folks.
Joe,
I went from diagnosis to operating table in less than a week. My nephrologist didn't mess around and in hindsight I am very glad for that because I didn't have much time to sit around and worry. You'll do great tomorrow, and we'll all be thinking of you.
Jim0 -
Hi Joealice124 said:New Diagnosis
You've earned the right to be terrified and whiney, but you'll be fine. Those kids will get you through! We're here for you too and promise to get you through this ordeal. Godspeed.
No one or no doc can say this is an easy surgery. It's scary. Lap opposed to open is easier on the body, but recovery does take time. Please allow the time to heal...physically, emotionally, and however else you need.
From the physical standpoint, muscles will be weaker; you start with two kidneys (one of which is not functioning adequately) and end up with one that has to do it all. Watch your salt and weight. And don't be afraid to be put on blood pressure meds if an internist prescribes it.
Share with your kids what is age appropriate. They will understand. And let them know you want to get better so you can spend more time with them; and that's why you need them to help you now.
Your tumor is/was in the size of a medium baking potato. I've been there-6 years ago-and came thru it.
Hang in there and we're here to listen.
Donna0 -
Hi Joedonna_lee said:Hi Joe
No one or no doc can say this is an easy surgery. It's scary. Lap opposed to open is easier on the body, but recovery does take time. Please allow the time to heal...physically, emotionally, and however else you need.
From the physical standpoint, muscles will be weaker; you start with two kidneys (one of which is not functioning adequately) and end up with one that has to do it all. Watch your salt and weight. And don't be afraid to be put on blood pressure meds if an internist prescribes it.
Share with your kids what is age appropriate. They will understand. And let them know you want to get better so you can spend more time with them; and that's why you need them to help you now.
Your tumor is/was in the size of a medium baking potato. I've been there-6 years ago-and came thru it.
Hang in there and we're here to listen.
Donna
Donna, your posts are as good as ever - a true pleasure to read.0 -
WelcomeDigger95 said:Diagnosis to surgery time...
Joe,
I went from diagnosis to operating table in less than a week. My nephrologist didn't mess around and in hindsight I am very glad for that because I didn't have much time to sit around and worry. You'll do great tomorrow, and we'll all be thinking of you.
Jim
Joe,
Welcome to our club which nobody asks to join. Although I had it relatively easy with a Stage i diagnosis and no problems over the years there are so many on this board doing well with similar diagnoses to yoursefl that you should be able to here from those in your situation. In fact a number of them have greated you as well. Good luck on your surgery and recovery and may they be uneventful as well. My Dr. wrote on my surgical or dischrge summary that I was no longer in pain. Hah! A little pain however is required for your memborship.
Icemantoo0 -
Good luck Joeicemantoo said:Welcome
Joe,
Welcome to our club which nobody asks to join. Although I had it relatively easy with a Stage i diagnosis and no problems over the years there are so many on this board doing well with similar diagnoses to yoursefl that you should be able to here from those in your situation. In fact a number of them have greated you as well. Good luck on your surgery and recovery and may they be uneventful as well. My Dr. wrote on my surgical or dischrge summary that I was no longer in pain. Hah! A little pain however is required for your memborship.
Icemantoo
Wishing you all the best tomorrow and with your recovery. Let us know how you are doing.
I am glad you can get it out so quickly. Before you know it you will be back with your kids and planning for other life events....godspeed.0 -
stay strong for the kidsBubbs21 said:Good luck Joe
Wishing you all the best tomorrow and with your recovery. Let us know how you are doing.
I am glad you can get it out so quickly. Before you know it you will be back with your kids and planning for other life events....godspeed.
Good luck Joe. As you said, stay strong for the kids. It is not easy, but they are counting on you. Gee, no pressure there. Going from diagnosis to surgery so quickly is the way to go. I also had mine within a few days of diagnosis. You can spend your energy on getting better. And not spend your energy worrying about it for weeks. Your kids will be happy to help. If not, we can send Gary or Paula to do laundry.0 -
Hi!
I was/am in much the same position as you. I am still waiting for surgery (September 12th.) I stumbled onto this site, just like you, and found the same comforting words from the same people. They truly are a great group.
My prayers are with you, tonight and always!
God bless you!0 -
A joke for Texas WedgeTexas_wedge said:A burden shared
And here is a good place to do it. Good luck tomorrow. Take the pain meds on schedule, expect a couple of rough days. Start moving and taking on plenty of fluids as soon as is feasible. Report back here as soon as you feel up to it and collect your spurs. Not long now to have your Club membership confirmed.
Since the discussion boards here sometimes carry jokes to keep the spirits up, I just thought I would share a really bad joke, one I was just told that might appeal to our warped sense of humor. I personally thought it was hilarious.
A man comes in to see his MD and the doc says I am afraid I have some bad news for you. You have both cancer and Alzheimer's Disease.
The patient replies, well at least I do not have cancer.0 -
Good one...Eliezer2 said:A joke for Texas Wedge
Since the discussion boards here sometimes carry jokes to keep the spirits up, I just thought I would share a really bad joke, one I was just told that might appeal to our warped sense of humor. I personally thought it was hilarious.
A man comes in to see his MD and the doc says I am afraid I have some bad news for you. You have both cancer and Alzheimer's Disease.
The patient replies, well at least I do not have cancer.
I hope its ok that I laughed too.0 -
It's done
Just going to manage a few words here. I am at home, still experiencing a lot of pain, but I did indeed survive. I was released around noon and after the most bumpy car ride I believe I ever had - I am in my own bedroom.
Surgery came off well, no complications. Doctors felt they got it all, no pathology yet. Very large ugly scar.
I will try to log back on tomorrow - perhaps the pain will be down a bit by them.0 -
Home!Joe_fh said:It's done
Just going to manage a few words here. I am at home, still experiencing a lot of pain, but I did indeed survive. I was released around noon and after the most bumpy car ride I believe I ever had - I am in my own bedroom.
Surgery came off well, no complications. Doctors felt they got it all, no pathology yet. Very large ugly scar.
I will try to log back on tomorrow - perhaps the pain will be down a bit by them.
Good for you Joe - well done. Do you have enough help at home to cope with your situation?
If you feel up to it, you can dig aroung in the threads here for useful tips on the practicalities of living in the early period of recovery. In fact, you might find it worthwhile asking for suggestions for dealing with any problems you have (both practical and psychological - if you have any). there's a lot of valuable experience available here and an infinite fund of goodwill you can tap into. Just a thought.
As iceman always says, it's tough at first but every day gets better.0 -
Home!Joe_fh said:It's done
Just going to manage a few words here. I am at home, still experiencing a lot of pain, but I did indeed survive. I was released around noon and after the most bumpy car ride I believe I ever had - I am in my own bedroom.
Surgery came off well, no complications. Doctors felt they got it all, no pathology yet. Very large ugly scar.
I will try to log back on tomorrow - perhaps the pain will be down a bit by them.
[Double-posting, drat!]0 -
Welcome Back! Nice to see you are out of the hospital quicklyJoe_fh said:It's done
Just going to manage a few words here. I am at home, still experiencing a lot of pain, but I did indeed survive. I was released around noon and after the most bumpy car ride I believe I ever had - I am in my own bedroom.
Surgery came off well, no complications. Doctors felt they got it all, no pathology yet. Very large ugly scar.
I will try to log back on tomorrow - perhaps the pain will be down a bit by them.
Home is so much nicer than hospitals. At least at home, I was able to watch my Beloved Washington Nationals (if it weren't for an off day, I might not have found the cancer).
Definitely look up what to do to help yourself. I have three pieces of advice: 1) Do not move quickly, 2) walk as much as you can, and 3) with any fever, call the Dr immediately. On the latter, I waited one day (four weeks out)...I thought I had a virus. Cost me three more weeks of recovery.
**** Luck!0 -
Can we talk pain management?
I almost hesitate to ask this after reading so many extensive cases on these sections. If I am being whimpy, just say so.
Just had my kidney removal this past Friday. Not being any kind of an expert, and all things considered, I seem to have lucked out with a dang good doctor and set of early results.
I have three incisions, Two fairly small ones top and bottom horizontally, and a longer one vertical say about 5 inches. I handled post op pretty well and was walking less than 12 hours after the surgery started. The second day was a bit tougher when I had an RN suggest I should "tough it out". My dumb butt thought "tough it out" meant wait until I couldn't handle it before I asked for help. Bad choice.
At any rate, Night shift came in and an angel put me on a pain management schedule that seemed to work for me. Something called Oxycodone 5mg, followed 2 hours later with Extra strength Tylenol. Alternate back and forth.
I got sent home Sunday.
Now the problem I am having is that it's just not doing the job. By the time I alternate it's wore off to a point that pain gets pretty bad before a new dose of Oxycodone. So what I tried to do is add the Tylenol each 2 hours which does stop the severe pain. I know you can't play with that narcotic stuff, so I figured increasing the Tylenol dose was the safer play. This is taking the edge off.
But now I read that you're not supposed to exceed 6 doses of the Extra Strength Tylenol in a single day. Therefore if I stay at this solution I am going to exceed that quite a bit.
So my question becomes what have other people done to get through the early stages of recovery? Is there another OTC that can be safely added to the mix? I live WAY out in the country and a trip in to the VA center, while doable, isn't really my best pick. The interstate ride alone made for a seriously bad ride home experience. (Do you guys know how many pot holes exist along 250 miles of travel? I do. Repeating it on purpose would seem to be in "glutton for punishment" territory.)0
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