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todd121
Posts: 641
Joined: Dec 2012

Hi. I introduced myself in a reply to another post last week. I decided to post again here at the top.

I'm 51 years old. A week before Thanksgiving I was on a business trip and started having blood in my urine and pain in my

side. I thought I was having a kidney stone, which I've had before. However, the pain started getting bad enough I couldn't

wait it out anymore so I went to the ER. The ER doc ruled out UTI, and decided to do a CT scan just in case. They found a

6.7 cm mass in my right kidney and recommended I see a urologist as soon as I could.

The next week was Thanksgiving, but I called first thing Monday morning. I looked online and found out that a university

near me (UCI) had what seemed to be a pretty good urology department. The head of the department, Dr. Landman, specialized

in laprascopic tumor, kidney and partial kidney removal. I got an appointment on Wednesday of that week. He orded another

CT scan the next week, this time with contrast and they decided to remove my right kidney as soon as possible. On the 10th,

I had my right kidney removed. It was done as a lap, but because the mass was in the center of my kidney, they wanted to

remove the kidney and surrounding tissue intact, so I had a large incision of about 6-7". There was a small possibility

that it might be a transitional cell tumor because of where it was. They ruled that out in surgery, and so only removed

about 1/2 the ureter.

I was supposed to have gotten my pathology report early this week. However, the doctor didn't call me as he said he would.

Toward the end of the week I started calling his office to get the result, but didn't reach him. So I still don't have the

pathology.

The CT scan was clear as far as other organs go and my chest xray was clear (as far as I know). There was a small cyst in

my left kidney, which he said was normal for someone my age. The only other abnormality was a small lesion on my left

femur, but it was what they called mixed sclerotic and lucent, and the doc said that kidney cancer lesions are rarely

sclerotic, so he doubted this had anything to do with my kidney. The doctor has been very upbeat. His attitude has been

that because my health is generally really good, and because this was a fairly small tumor and confined to the kidney, that

this surgery likely cured me. However, when I've been doing reading, I don't see the numbers that make me feel as confident

as he is about the chances. I suppose it's his job to be positive.

I have an uncle who is a retired medical oncologist. His attitude has been more guarded. He's taking this very seriously.

His advice was as soon as I get my pathology results see if I can find a study to get into to reduce my chances of

recurrence.

My healing has been going pretty well. The worst problem I'm having right now is that I get exhausted fast and suddenly. I

feel it in and around my eyes. Just the past 2 days I've started getting headaches at the base of the back of my head. It

feels like those you get when you sleep wrong. I wonder if these things have to do with the surgery, or if they are the

result of having 1 kidney and the body not adjusting?

They did a study before the surgery and my kidney function was ok. Both kidneys were sharing equally in the work even

though my left kidney is smaller than my right. When they released me from the hospital 2 weeks ago, they said my creatnine level was 1.9 and stable. I believe it was 1.2 before the surgery. My doc said he expected it to drop a little and maybe end up around 1.6 in time.

Doing research online, I find that I get panic attacks when I see statistics that don't look promising. I have a hard time knowing what to share with friends and family. Last night at Christmas eve dinner, my daughter-in-law was asking my about the prognosis. My sons (in their 20's) and ex-wife were listening while I shared the numbers I've seen. I don't think they really wanted to hear such bad news at Christmas eve dinner. Perhaps I should have saved it for another time... I felt guilty about mentioning it this morning. My younger son got a bit angry and asked me why I was talking like that, that these numbers didn't tell me what was going to happen to me in my particular case. I told him he was right. They don't. However, I do want people to know what's going on and what this disease is about. He started hassling me about going to the gym (which he's done on the past). I'm glad he did. He's right. I do need to get up and take better care of myself.

If anyone has advice about taking care of yourself after this surgery, I'd appreciate hearing it. Before all of this happened, I had planned a trip to Vegas the day after Christmas. I cancelled it when I scheduled surgery. Yesterday I decided I'm going. I'm doing pretty well. I'll take it easy, but I don't want to let this illness rule my life. So tomorrow I'm off to Vegas for 3 days. It's about a 4 hour drive from my home. I'm not much of a gambler, but the friend I'm going with is. I like to watch the shows and eat. I'll stay out of smoke filled rooms and get extra rest, but I really want to live as much of a normal life as possible for as long as possible.

Merry Christmas to all of you here. I'm glad I found this place.

Todd

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Todd.  Very glad you got through your surgery so well.  Sounds to me that until you get your pathology report the only thing you need other than that trip to Vegas (if you're up to it) is Tylenol for your headache and a Xanax to calm down.  I'd be a little upset that three weeks have gone by and your doctor hasn't given you your path report but until you have it there is no reason to worry.  At almost 7cm the mass wasn't small, but what it was and what stage it is will tell you where you need to go from here.  I'm sure if you were Dr. Landman's brother you'd have it by now. I think now is the time to become a pest and call again. 

All the luck

Jeff

todd121
Posts: 641
Joined: Dec 2012

You mentioned if I was his brother I'd have it by now. It's funny, because the last time he talked to me before the surgery, that's exactly what he said "I'm telling you just like I'd tell my own brother".

Well I pestered them Thursday and Friday, but have a feeling he might've gone on vacation already. The nurse called me at the end of the day Friday to tell me she'd sent him an email to remind him to call me. I'm hoping he calls tomorrow, the day after Christmas. I asked for a copy of the report. The office said nobody is allowed to share it with me until the doctor talks to me.

The CT scan with contrast also called it 6.7 cm (both reports with and without contrast agreed on that). From what I read, that's a 1b (but I understand it's scraping the edge of a 2)? I do need the report. To be fair, it was 2 weeks yesterday, so I may get it this week. However, my next followup appointment isn't until Jan 9th. I certainly don't want to wait until then. But I do hate being told someone is going to call and they don't. I thought I was being patient, but on Friday I was panicked and angry, not wanting to wait another week.

Thanks. I have some Xanax. I'll take one. And a couple of tylenol.

Appreciate the comments.

Todd

dhs1963's picture
dhs1963
Posts: 392
Joined: May 2012

Do not look at the mortality figures.  They are based on old data, and everyone is different.  Treatments have changed, which means the nubers are different.  

 

As for the pain, etc, you had major surgery.  It insulted your body.  It will take time to heal.  But your body is healing.

 

Enjoy vegas.

icemantoo's picture
icemantoo
Posts: 1653
Joined: Jan 2010

Todd,

 

You just had surgery a little over 2 weeks ago. A four hour drive to Vegas each way and all the walking, put it off for a month or two. Relax, you should be doing normal things for a few hours each day not 12 hours a day which is short for Vegas. This is not a Marathon.

Icemantoo

therapture
Posts: 25
Joined: Dec 2012

Todd, as icemantoo noted, going to Vegas now is not a good idea. I am just 21 days out from my surgery on 12-4, complete right side nephrectomy, and I certainly did not want to be walking around for hours at a time in the second week. And I consider myself tough, with no pain meds since leaving the hospital. Tough or not, the body has been insulted in a big way and even though you may feel good, your insides are a long ways from normal status. I pushed it a bit too hard last thursday and friday, and was in some pain Friday evening. Nothing a good long nap on the couch couldn't cure, but it was very uncomfortable prior, and I would not have wanted to be anywhere but close to home.

 

The surgery, even laparoscopic, is a major affair for your body. Some tiredness and weakness will occur, and afternoon naps are a wonderful thing when this happens!

 

Conserve your energy and heal the body first, there is plenty of time for Vegas! And do pester the doc about the pathology report in a nice way. It is after all, your life, and YOUR pathology report :-)

mickf
Posts: 15
Joined: Aug 2012

Hi Todd, I am 6 weeks post operation for total removal of my right kidney, I had a lot of support from the good people on this site. I try to follow medical advice and take it easy. I have lost count of the number of times I have felt really good and managed to overdo things. When I have overdone it, I certainly know about it either later that day or the day after. I have been off meds for about 4 weeks but recently have had to resort back to meds to control the pain. I can only give this advice to you -  take it easy and don't even think about doing anything strenuous no matter how good you feel for at least another 6/7 weeks.

Mickf

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

Hi Todd,

Be careful what you wish for;

"If anyone has advice about taking care of yourself after this surgery, I'd appreciate hearing it. Before all of this happened, I had planned a trip to Vegas the day after Christmas. I cancelled it when I scheduled surgery. Yesterday I decided I'm going. I'm doing pretty well. I'll take it easy, but I don't want to let this illness rule my life. So tomorrow I'm off to Vegas for 3 days."

My advice has always been drink plenty of water and walk as much as you can following surgery building up to the point that you can briskly walk 4 to 5 miles with no ill affects before attempting anything more strenuous.  Perhaps better advice would be, if there is a pre-surgery activity that you can measure your post-surgery performance against, start doing it in moderation and work your way back slowly to where you were before all this happened, for me it was walking, but running, biking, golf, weight lifting, and rowing are common examples.  When you get back to where you were your recovery will be pretty much complete.

The desire to put all of this behind you and get back to "normal" is common and I suspect the trip to Vegas is a result of these emotions.  The iceman usually tells the tale of a gal that decided to ride a rollercoaster a short time after surgery and regretted it.  No one can say for sure how your body will react to the trip and you are likely to find that you weren't as ready as you thought you were, but you'll have a bed handy so don't be afraid to use it more than expected.  After 4 hours in a car you'll understand and probably won't be looking forward to the ride home.

Good luck,

Gary

todd121
Posts: 641
Joined: Dec 2012

I wish I had read your advice earlier, before I left. We left this morning. It was a 7 hour drive. The traffic was horrendous. I am tired, but I'm ok. If I'd seen all your advice before we left, I would have called it off. We stopped every hour and I drank plenty of water during the trip. I drove maybe 1/3 of the way, but left most of the driving to my friend.

While we were driving, the doctor called with my pathology report. This also would have been welcome to have heard before we started out. I'm a T3A N0 M0 and Grade 3. Not what I had hoped for. The doc said I moved from T1b to T3A because there was some involvement with some tiny veins in the kidney. It hadn't moved into the larger veins, but because it involved the vein that made me a T3 instead of a T1.

I've been panicky and my heart racing for the past couple of hours. I do wish I was home.

I'll rest and hit the sack early. No late night. That's for sure.

Todd

 

 

icemantoo's picture
icemantoo
Posts: 1653
Joined: Jan 2010

For most of us it takes up to a year to fully recover from the surgery

although we can do things in moderation for a few hours a day beginning a few weeks after surgery. Garym pointed out my example of the young mother who felt so well that she went on a rollercoaster 90 days after surgery where I recommend almost a year for that. There is nothing we can not do as survivors only that we may have to wait more than a few weeks for the strenuous stuff. I hope now you are in Vegas that you do in fact relax. Now would be a good time to plan something for the Summer or Fall.

As for the not so perfect path report follow your uncle's suggestions as there are many on this board doing well with similar imperfections on their reports.

Icemantoo

foxhd's picture
foxhd
Posts: 2055
Joined: Oct 2011

After awhile, it all becomes "normal". Much less panic. You'll learn to plan accordingly. If someone had said to you a few months back, "Let's run 10 miles" you'd know better. (unless you have been running). You are different now. Don't have to be worse, just different. Give yourself time and listen to the voice of experience of this board. Been there, done that applies here. I've been through alot in the last 20 months and generally none the worse for wear. Not much I can't do that I used to do. And I remain in better shape than most everyone I know. There are setbacks like what you are going through so be ready for common sense, trust the people here and you'll learn to do fine.

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