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Been silent in the week since NED

dhs1963's picture
Posts: 513
Joined: May 2012

A week ago I got scan results back, which gave no evidence of disease.  This was my first NED;  background diagnosed with RCC 5/1/2012; nephrectomy 6/19.2012:  path:  T1b (5.5 cm) grade 4 with Sarcomitoid differentiation. 

Six month scans showed a solitary  1cm mass on the lung( upper left lobe); wedge resection on 2/5/2013 shows it to be similar to the primary tumor. 

First scans after that were last week.  They showed no evidence of disease.  There was one area in the lung that the thorasic surgeon thinks is from the surgery; it is not metabolically active based on the PET.

I wish I can say I am curedl I do not have to worry.  But I know that there is a likelyhood of further cancers.  My Dr's strongly recomment adjuvant theropy so we continue with active survailance.  The plan for now, which seems reasonable to me, is active survalence every three months for a few years.  If I get lucky, the interval will increease.  When something pops up, if it can be removed, they will cut it out (one lung met no problem...multiple lung mets in multiple lobes, well I need to breath).

As for medicines, IL2 is probably off the table; Sarcomitoid tumors apparently do not respond.  But, they will worry about it at the appropriate time.

I still think I will die from RCC before I hit 60 (49 now).  But, the next three months belong to my me, my daughter and my wife.

Time to play hard. 

unfortunately, since I have more than three months to live, I need to worry about speeding tickets again. 

Texas_wedge's picture
Posts: 2798
Joined: Nov 2011

"IL2 is probably off the table; Sarcomitoid tumors apparently do not respond"

Fortunately that's incorrect - sarcomatoid RCC responds well to HD IL2 so it should be very much on the list of options - if you need further treatment, but we hope you won't.  The only thing you have going against long survival is the sRCC de-differentiation. All the other factors - youth, stage and tumor size are favourable so you should make 60 no problem.

todd121's picture
Posts: 1449
Joined: Dec 2012

I think it's great you're NED. I hear your concern and I definitely understand it.

We all hope you stay that way, and you may!

Best wishes,


donna_lee's picture
Posts: 995
Joined: Feb 2009

The game has gotten more difficult, but don't throw in the towel.  At my Dx seven years ago ( June 2006), I was given 5-7 months to live because the initial tests had shown that it was already Stage IV.  My first reaction was to throw stuff away, clean out the garage, cry a lot...you all know the immediate routine.  

Then more tests; it wasn't in the bones; a week later, saw 3 specialists in the same room at Oregon Health Sciences University---Urologic-Surgical Oncologist for the kidney and possibly nodes, Thoracic-Surgical MD specializing in cancer for the liver and exploratory, and a Medical Oncologist.  It was operable and highly likely they would get it all.

Yes, they made me a gutless wonder, because I really did have a congenitally defective bile duct that was causing the original problems I was exhibiting.

Tests over the next year; a single node had enlarged in the abdomen; had it removed (July 3, 2007). I didn't have any other plans for the 4th.  Tests over the next year; a single node had enlarged; had it removed (June 2008).  Were those truly recurrences.  Not likely, just nodes that already contained the cancer cells that hadn't grown large enough to be detectable at the time of the first surgery.

Hang in there, keep living.  You have a lot to live for; and make plans for the future. Keep searching for answers.  Good Luck.


dhs1963's picture
Posts: 513
Joined: May 2012

I am trying to be realistic in my life planning.  That means I play more now. 

If I love till 80, great!  as long as I am reasonably health.


I was actually surprised by the NED....I expected something to pop up.  But it did not.  



Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

It's that darn bus you have to look out for when you cross the street.  As a good friend of mine just reminded me...  Treat stress and worry like a dog approaches life..... if you can't eat it or play with it......urinate on it and walk away! 

MDCinSC's picture
Posts: 574
Joined: Feb 2013

If you're getting tickets, that means they have to chase you down! That is FAR better than them knowing where to look for you, if you get my drift!

Live it like it goes on forever!  Drive it like you stole it!  If you aren't enjoying it, its not worth having!

foxhd's picture
Posts: 3183
Joined: Oct 2011

I don't think anyone thinks about their cancer anymore than I do. Especially since I still have active tumors despite all the progress I've made. I can honestly say that it has absolutely no effect on my optimism or daily attitude. I refuse to be defined by diagnosis or prognosis. Life is too much fun. Motorcycles, pizza and beer. Guitars and golf. Exercise and running. Granddaughters. One should not worry about the future. Live in the moment. When they say stop and smell the roses, they don't mean when they are out of season. Here today, gone tomorrow. Don't waste a minute worrying. Fill that space with enjoyment. Perhaps the '70's gave me just enough brain damage that I don't know any better. But I doubt it. Enthusiasm has got me by the......,well, you know where.

todd121's picture
Posts: 1449
Joined: Dec 2012

Enthusiasm has you by both ears? :)

Hope it tugs gently...lol


Eims's picture
Posts: 423
Joined: Feb 2013

Fox you had at motorcycles, pizza and beer!!!

Eims x

Posts: 3
Joined: Apr 2013

God Bless you! Your are a blesssing to all of us.

Limelife50's picture
Posts: 476
Joined: Nov 2011

Well you are much better off then you were on 5/01/2012,glad to hear your surgeons were able to do a lung resection.

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