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Hello I am a new member

cgz
Posts: 10
Joined: Dec 2012

I just had robotic surgery for a T1A N0M0 clear cell last week and they tell me I'm cured. I just can't seem to wrap my head around that all my life I cancer was the one thing I feared most. Now I have it. Well my surgeon says I had it but no more. I am 65 years old and would like to think I could get another 10 or 15 years out of this body. I have always been pretty healthy (no BP or other chronic problems) so the thought of a recurrence scares the hell out of me. I have seen "stats" until my eyes crossed and don't know which ones to believe. I've been to "lifeMath.net" and every other web site I could find to get some encouragement and still come up with an empty feeling My surgeon is cocky and pretty black and white. He says he has done 100+ robotic surgeries and has a "0" recurrence rate. For a T1a. Is this guy full of crap or am I really cured? Anyone have any insight?

Thanks'

CGZ

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I will not say you are cured until future scans show all clear. 

But, assuming your cured is probably a reasonable assumption, assuming you get the appropriate follow-on scans.

cgz
Posts: 10
Joined: Dec 2012

It's a grade 3 but he surgeon said the stage was much more important than the grade.

icemantoo's picture
icemantoo
Posts: 1555
Joined: Jan 2010

CGZ,

I am assuming that in addition to the information you disclosed that your tumor was also relatively small, under 4 cm. While Kidney Cancer is a very deadly disease those of us who had the surgery early (before the tumor became large or metasized ) are often  fully cured by the surgery alone. You still need follow up scans for 5 to 10 years and your chance of getting Kidney Cancer in the other Kidney according to my doctor is about 2 %.

 

I am 69 and had my surgery 10 and 1/2 yeas ago. Fay across the street is 81 and had her surgery 17 years ago.

You should be fine.

 

Icemantoo

 

 

cgz
Posts: 10
Joined: Dec 2012

It was 2.7cm with "clear clean margins" whatever that means.

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Clear margins means that the edge of what they cut out was normal.  The tumor was encapsulated in what they got out.  T1A with clear margins is as good as it gets. 

But, get the followup scans. 

cgz
Posts: 10
Joined: Dec 2012

I guess I'm lucky they caught it and "fixed" it but fear is my worst enemy and your encouragement helps.

Bubbs21
Posts: 44
Joined: Jul 2012

Welcome to the club and congratuations on finding the tumour so early.  I too had a stage 1 grade 2 tumour removed.  My surgery was in Nov 2012 and the rumour mesaured 2.2cm.  My surgeon provided me with the same stats that he has never seen or heard of a recurrence of a T1a tumour. 

Cancer is such a scary term and we hear the stories about the disease.  However, cancer is really a collection of diseases each with their own peculiarities and each with their own staging.  For those who are lucky enough to find the tumour early and be able to remove the cancer surgically, prognosis is very good.  I personally, feel gratefully to the medical staff who helped find the problem and solution.  I feel like I won the lottery. 

It will take time to get your head around what happened and how to integrate the information.  Whatever, you do...do not let it consume you.  There are so many things to enjoy while we have our time on this earth.   Do not let 'the fact that you had cancer' rob you of the time and energy you need to enjoy the things that are important to you.  This is just a blip in the road of a very long journey.  Take care.

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

Your prognosis sounds excellent. No, you can't afford to forget you had cancer and, therefore, followup regularly with scans, but we don't see many reports as optimistic as yours. Sounds to me you've received a little zap in life to remind you there's still a lot of life for you to live. Enjoy it.

Curious though, how did you catch your cancer so early?

 

cgz
Posts: 10
Joined: Dec 2012

It's a long story. I had a routine physical 4 months ago with blood work and my Creatinine level was a little elevated from my last tests with another Dr.. I asked my GP and he said "no problem, we could follow it up in few months. Well, I'm still waiting for his office to call with a new appointment. (HE'S FIRED!) In the mean time I called a Urology group and got an appointment with one of their Doctors. He was not too panicked with the creatinine but he said an ultrasound would be a good thing. The rest is history. There was a urologist in the same group that had done 85 partial nephrectomies with a DaVinci robot and I was #86. He did the surgery last Monday. I am a Ca. transplant who now lives in Southeastern AL. We have two large hospitals in a city named Dothan and both have a DaVinci. two days in the hospital and home.

 

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

That in itself is a terrific story.  Since kidney cancer is often silent, even having the raised Creatinine level was a bonus.  So many have no signs until cancer is in advanced stages. Way to take responsibility for your own health!!! Happy for you.

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

Short answers to your first two questions are "No" and "Yes".  Your surgeon told you true and you are cured. 

His statement that stage is far more important than grade is absolutely correct. 

You should continue to get regular scans but you shouldn't worry about them (easier said than done, admittedly) because they're almost certain to remain clear.

I am also intrigued to know how your tumour was spotted so early - presumably it was during an investigation for something else?

Don't go cross-eyed looking for survival stats. Don't even bother to look at any - apart from all being based on out-of-date data, they don't apply to individual cases, so for indicating your likely future life-span they are completely worthless.  If your general health is good and you continue to lead a healthy lifestyle, you've probably got at least another 20 years of good quality of life ahead of you.

 

cgz
Posts: 10
Joined: Dec 2012

If you look at my post "to Alice" you'll see how we found it. Thanks for the encouragement. Being new I guess I need all I can get. Problem is my body is 65 and my brain is 45.

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

Huh!  That's nothing - my body's 70 and my brain's about 14!  I echo what's already been siad - stick around here and you'll learn a lot of useful stuff in no time and probably have even more laughs than before!!

cgz
Posts: 10
Joined: Dec 2012

Thanks...I'm trying to learn all I can but Dr's don't always give us real info. They use words that do not always have a meaning. They dance around issues sometimes, which drives me crazy. I know I got lucky with the small tumor and timely surgery but I guess sometimes, I'm looking for a 10 year unlimited warranty that I know I can't get. Cancer has been my biggest fear all my life and that's saying something for a Vietnam vet and retired cop. In this forum I'm trying to draw on other peoples experience and knowledge and find out things the Dr.'s don't tell you.

Thanks to all Please keep the info comming I learn a little from everyone and thats a good thing in this club.

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

Hi cgz,

I was right where you are just over three years ago, your reaction to being "cured" is conpletely normal.  Healing mentally can take longer than healing physically, but rest assured that things will settle down and you'll get used to the fact that you HAD cancer.  A surgical "cure" for RCC caught early is pretty standard now days, yours was caught very early.  I visited my urologist today following my annual CT, he told me there is less than a 2% chance of reocurrance and my tumor was larger than yours at 4.2 cm (still small by any means).  Odds are for Vegas, but I'll tell you what, I'll bet you 10 to 1 that when you do punch out (in 20 or 30 years) it won't be because of RCC.  Get used to hearing NED (No Evidence of Disease) for many years to come.

You're a lucky guy,

Gary

cgz
Posts: 10
Joined: Dec 2012

Thanks. It is hard getting used to the fact that I was cured (so they say) before I even knew it was actually cancer. Before everyone called it a small renal mass. By the way, I smoke a good  cigar a few times a week. I know they say dont smoke but I don't inhale. Anyone else have that problem?

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

Nope, no cigars for me. Are you--by the way--a golfer?

Your post triggered memories of picking up the smell of cigar smoke on John after a day on the golf course. He too would say, "I don't inhale." His rationale was, "It keeps the bugs away." (And bugs weren't the only thing it worked on.)

Joking aside, smoking anything works against you (even if you don't inhale). I vote nix the cigars.  

cgz
Posts: 10
Joined: Dec 2012

No don't golf and I've only met two women that liked the smell of a fine handmade cigar. I don't have a rational except I enjoy them. I don't drink alcohol or caffeine don't drive fast cars or chase pretty women anymore so what's left? Shouldn't we be allowed a small pleasure? It just seems like smoking causes everything from earthquakes to hair loss. I get the cigarettes thing concidered they are made from less than 50% actual tobbaco but a cigar no one inhales thats made from fine tobbacco. Oh well, guess i'll take my chances till i'm proven wrong.

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

65 with a small tumor excised. Prognosis excellent. Stay on top with follow up appts. and you are home free. I hope you aren't afraid of a heart attack or being hit by a meteor. Otherwise you will never relax and enjoy the next few decades.

cgz
Posts: 10
Joined: Dec 2012

Don't give a dam if a plane falls from the sky and lands on me tomorrow. Just don't want todie slow and sick in some hospital

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

that happens, it most likely will not be from kidney cancer. That is being managed by specialist who know your health history. Eat well. Stay active and love life.

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

Okay, small pleasures win.  Everyone deserves a vice or two. 
 

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

I don't smoke or do caffeine, but I do enjoy beer, cars, golf, motorcycles, and pretty women, of course at 61 I'm much, much younger than you. LOL

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