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I have just been told I have Kidney Cancer

jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

 

I am a 43 year old American living over sea in Okinawa Japan. Two weeks ago, after a ER Visit, Dr.'s found a 2.5 cm tumor encased in my right Kidney. I have been told that it is Renal Cell Carcinoma, and it is stage T1a. I don't know anything about Cancer, much less Renal Cell Carcinoma. And to make matters worse, I am in a country were I don't speak the language. With help from friends, I have moved my care from the original ER hospital to the University Hospital.

I am glad I found a place with people that have walked this road. I have a great group of friends and family here on the island to help me thru this, but it's nice to connect with people with first hand experience. 

 

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

Presumably you're working over there and staying for the foreseeable future?  It sounds as though you've done the right thing in transferring to a university hospital and fotunately you're in an advanced country with all the necessary facilities.

With a small, encapsulated tumor at t1a you have little to fear aside from a couple of days of pain after an op. assuming you have one, rather than taking the watch and wait approach.  How do they know for sure that it's cancerous?

It's good that you have friends and family about you but do ask all the questions you want to here and we'll all give you any extra help, info.  and support you may need.

jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

I have been told by the doctors that there is very little chance that it is not cancer. The plan is a Partial Naphrectomy to remove 1/2 my right Kidney. The Naphrectomy is the easy part, they are really worried about complications from this surgery. I have a blood disorder called Protein C Deficiency. I get blood clots really easy. I have clotted about 10 times in the last 10 years. I even have blood clots on blood thinner. I was diagnosed with Protein C Deficiency 2 years ago, since that time I have clotted 1 more time. So it will be a little more than just remove it and go on your way. I have to be admitted a week before hand, the I was told to plan on 14 to 21 days after. They are really worried about me clotting during and after the surgery. I go back Monday to find out what the game plan is moving forward. They said they want to be ready for the surgery at the end of June/ beginning of July.

Augustine
Posts: 2
Joined: Apr 2013

JC. 80% such tumors are cancerous and normally a biopsy on kidney tumors is not taken to determine its nature. I reckon if it shows sign of growing, then it should be surgically removed regardless it is cancerous or not.  I don't think for a 2.5 cm tumor you would lose as much as 50% kidney.  But the worrisome point should be the condition of your blood. If surgeon finds that there is complication during stitching then he/she may resort (with your prior consent) do a total nephrectomy i.e. removing the entire kidney. In most cases, the remaining one kidney should do the function normally. I reckon it is a responsible approach to spend more time watching your blood conditions and a routine exercise e.g. half an hour walking for 3-4  weeks prior surgery would greatly help. Ag.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Jc,

The easy part of RCC with  a small tumor is that  the recovery rate with surgery alone is close to 100%. While watch and wait may be an option at 65 because the surgery could do more harm than good, it is much less of an option at 43 where over time the tumor gets bigger and spreads. It is at least a little reasuring that tha doctors are focusing on your other heath problems to minimize the risk of the surgery. Normally a nepherectomy or partial neperectomy are not dangerous surgeries. May you get thru this surgery with no complications.

 

Icemantoo

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

You're right, of course, iceman, that the choice does depend significantly on age.  However, it also depends on general health and co-morbidities which affect surgical risks.  The tumor won't necessarily get any bigger and it won't inevitably spread.  It may do either or both but there's no certainty about it.   Therein lies the wisdom of considering watch and wait - undertaking a hazardous operation if there might be no need would be foolish.  Nothing dramatic is going to happen with the tumor over the next few months.  I'm intrigues to know how the doctors (without a biopsy) can know of such a small tumor that 'there is very little chance that it is not cancer' - I would want an expert second opinion on that before deciding on a possibly fatal surgery.

The advice to get enough exercise now is well taken and also, if not seen to already, to seek expert advice on diet for optimising the handling of the Protein C deficiency.

 

jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

It is a lot to digest, overwhelming actually. I do know, that I want the tumor out of me, and as quick as possible. I have a day of testing tomorrow and a meeting with the Doctors in the afternoon. I hope to have a better picture of what is going on by the end of the day.

jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

Doctors have decided to move ahead with surgery. It was decided that a open partial nephrectomy is the best option. My surgery has been penciled in for June 13th. 

val1963
Posts: 27
Joined: May 2013

my story is much the same as yours as far as diagnosis.   no biopsy...too risky , just remove my left kidney.   surgery scheduled for june 5 th.   good luck and stay positive

 

jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

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jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

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jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

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jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

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jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

Doctors have decided to move ahead with surgery. It was decided that a open partial nephrectomy is the best option. My surgery has been penciled in for June 13th.

jcoscia's picture
jcoscia
Posts: 16
Joined: Apr 2013

I don't know why it posted so many times. Anyone know how to delete the extra post?

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

Don't think you can get rid of extra posts. It happens when we become impatient and think CSN is ignoring our request to "submit". And then all of those submits show up as posts! It happens to us all. I sometimes go in and hit the edit button (only you can edit) and just put "dup" on the excessive posts so readers know it's nothing new,

Wishing the best for you! Stay positive.

Eliezer2
Posts: 56
Joined: Aug 2012

I am approaching my 13th anniversary with it in a few weeks! 

Beat it and don't let it beat you.  You can live forever with RCC, well - ok - not forever.  Just until you are so old that you like Bing Crosby music!

I just noticed your June 13 date for surgery.  Coincidentally I had MY kidney removed also on June 13, but it was June 13, 2000 and I am still here to complain and tell you about it!

Let's do coffee together 13 years after you have YOUR surgery!

 

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

loved your post eliezer2 ;-)

eims x

val1963
Posts: 27
Joined: May 2013

I love all the posts from everyone!   I was paralyzed with fear, shocked to the core and about to bury my head in the sand just 4 days ago,  then my son sent me this link and wow!   the angry, full of anxiety and crazy thoughts or actions posts confirm I am not alone with my fear and the loving, supportive, informational ones inspired me to put one foot in front of the other and educate myself about this enemy in my kidney.   I'm still scared, nervous, full of anxiety sometimes but others I am right here reading all the sunshine you pour out to those in need!   Thank you seems not enough but THANK YOU ALL!!!   

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

You are not alone Val. It does get a little easier with time. It is what it is. Stay positive. And read here alot. You'll be surprised at the info your Doc may give you that you can agree with or question. Always stay armed with knowledge.

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