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SammySue
Posts: 7
Joined: Nov 2013

I was diagnosed with RCC after having every test known to man.

I should be glowing brightly.

I had a partial nephrectomy.

There was no cancer.

They told me 98-99% cancer and must have surgery.

What do you think?

I am lucky but having a hard time recovering from surgery.

Could they have read the pathology report wrong?

SammySue
Posts: 7
Joined: Nov 2013

Can I ask what N/A to my question means

icemantoo's picture
icemantoo
Posts: 1547
Joined: Jan 2010

SammySue,

Most of us like myself and the other 95% are given the diagnosis that this mass on our Kidney appears to have a 95% probability of Cancer. We have the surgery and  yes it turns out to be Cancer. Although you went thru the surgery the odds were 20 to 1 against you that it was Cancer and you were one of the lucky ones that does not have to worry about recurrance or the Cancer spreading. Facing those odds you had to go thru the Surgery otherwise Kidney Cancer grows and can kill you.

 

Sorry you had to join our club.   Could the pathology be wrong? Who knows. Sometimes these masses grow into Cancer as they get bigger. That could have been your case.

The only requirement for our club is the diagnosis and having gone thru the surgery for your initiation. Sometimes people try to sneak in from say a motorcycke accident where the Kidney is removed, but there are no Cancer issues.

 

Recovering from the surgery is not fun but for 95% of us it beats the alternative.

 

Stick around for a while so we can help you thru recovery from the surgery.

 

N/A usually means, not applicable.

 

Icemantoo

SammySue
Posts: 7
Joined: Nov 2013

I do consider myself very lucky.

I received the pathology report.  I was thinking of asking for a second opinion on the results.

I know this sounds stupid but do they save the mass they took out so someone else could view it?  Or is a second opinion just another pathologist reviewing the first persons report?

There was a marker for RCC that was positive but they still said no cancer. I will have to find out what this is.  I tried to read and research all they said.  I was so upset when I read the report and found that I just pitched it.  I know stupid but I was so upset.  They didn't believe the science they believed whatever their experience was.

They do not want me to return.  They said there is no reason for follow up.

SammySue
Posts: 7
Joined: Nov 2013

I don't know what you mean by sneak in with a motorcycle accident?? 

elpasorudy's picture
elpasorudy
Posts: 78
Joined: Jan 2013

I get my pathology report Monday. Doctor said 85 percent change that it is cancer. Had a partial done Oct. 16. My recovery has been going well. What kind of issues are you having? I am hoping that my report is similar to yours: no cancer

SammySue
Posts: 7
Joined: Nov 2013

I am having a really great amount of fatigue and also the swelling.

GSRon's picture
GSRon
Posts: 1245
Joined: Jan 2013

SammySue.. expect to feel lousy for some time.. We are all different, but it can take months.. a year even to get back to your old self..  The deed is done.. now heal up..!  Walk a lot.. drink a lot of water.. look at your diet and make changes as needed..  Do a fist pump or two..  you got past the initiaion, so to speak..  But I will correct the Ice Man a bit.. all who have been touched by RCC are welcome here..  especially the Care Givers...  To me a Care Giver is an angel... (M or F). 

Be Well All..!

Ron

icemantoo's picture
icemantoo
Posts: 1547
Joined: Jan 2010

Sammy,

 

Unfortunately whatever the results of the pathology you can not skip the recovery. It sucks. Generally you should be back to your normal routine in about 6 weeks.

As for the motorcycle accidents. We have had some posts from those who have lost a kidney as a result of a motorcycle accident. No relation to cancer, but they wind up having one of their kidney's removed. Others on this board have had their RCC discovered as a resukt of having been in a motorcycle accident.

 

Years from now you will be able to put this pain in perspective.

 

Icemantoo

 

MeMeJoy
Posts: 68
Joined: Apr 2013

Hey SammySue -

I know exactly what you are going through! In May of this year I had a hand assisted laporascopic radical left nephrectomy b/c of a 10 cm tumor that everyone was sure was cancer. I also have a family history of RCC and due to the size and growth rate (~8cm in 3 yrs) , I was prepared for the fact that it had probably spread. For a month I lived with the fact that I had cancer. Then, 10 days after my surgery I was told it wasn't cancer after all. It was MEST - mixed epithelial and stromal tumor - of the kidney.

The recovery from the surgery is no walk in the park - physically and emotionally - regardless of whether or not it was/is cancer. And even now, 6 months later, I still obsess over it at times. In my case I have 2 other spots on my remaining kidney, and  a spot on my spleen,  that will be checked yearly. I can't help but wonder if they should be checked sooner since the other one grew so fast. And I worry that I may lose that kidney as well. 

Did your pathology report state what the tumor was? Or just "not cancer"? Do you have any follow ups scheduled?

I know it sounds wrong, but hearing them say, "Oh it wasn't cancer afterall.  OK, well, have a nice day and come back in a year" seemed somewhat anti-climatic and left me with more questions than I started with. I was on an emotional roller coaster for a few months.  And when people find out that you didn't have cancer they seem to think that means that you are all of a sudden better. As though you didn't just have major surgery. And I times I felt that way too - One minute I was on top of the world - had a new lease on life. Then the next minute I was exhausted, wondering what was wrong with me - it's not like I had cancer - I should be happy and stop complaining right????...... I still feel that way sometimes.

 Just remember that you have been through something major, and it takes time. And it does get better! :)

If you need to talk feel free to message me!

 

 

 

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