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New here.. just a few questions.

Babygirl05's picture
Babygirl05
Posts: 7
Joined: Oct 2017

Hello, I was diagnosed with CCRCC stage 1 grade 2 and had an open partial nepherectomy on Sept 5.  I am 39 years old.  My urologist, who did the surgery says he got it all out and that I had clear margins so I was now NED.  I haven’t been to an oncologist and I’m not sure I need one since he says he got it all out.  I seem to be healing well but yesterday and today I have been having some pain around my incision.  It looks good, no open spots or anything, but pain on the inside.  Is this normal?  I did more walking yesterday than usual so I wasn’t sure.  

Also one more question.  In my pathology report it says NX so that means they didn’t assess nodes right?  Does that mean the doctor thought my nodes looked clean so he didn’t remove any for testing?  Why not test them in case?  I worry because for a couple years doctors have told me that all I had was a fluid filled cyst and I actually let them puncture my kidney and drain it last spring.  I worry that allowing them to do that, could have allowed cancer cells to get out of my kidney.  The tumor was growing inside the cyst that was completely inside my kidney.  I got more sick after that kidney puncture procedure.  Lost almost 30 pounds, couldn’t eat, got dehydrated. It was awful.  They just kept telling me it was anxiety.  I switched doctors and insisted on more testing and they finally agreed to remove it because it looked like it could be RCC... but they said it probably wasn’t.  Turns out I was right and they were wrong.  Glad I pushed.  So anyways, should I see an oncologist, should I be concerned?  

APny's picture
APny
Posts: 1498
Joined: Mar 2014

So sorry you have to be here but welcome. Yes, it's a good thing you kept pushing. Sometimes we are in awe of physicians and assume they know it all. But they don't, which is why "be your own advocate" is such good advice offered on this forum. They did not assess my lymph nodes either. I was also stage 1 and had an open partial. I think they can tell from the appearance whether there's concern. But perhaps you should ask your surgeon why and put your mind at ease. As for the pain you mention, you're barely a month out and the inside heals a little slower than the outside. It's been a while for me but I'm sure a month later I still felt discomfort. Again, something to ask your doc if it's causing you concern.

Bay Area Guy's picture
Bay Area Guy
Posts: 190
Joined: Jun 2016

You know better than anyone else how and what you feel, so when you know deep in your heart that something isn't right, then yes, push the docs like crazy.

I believe you are right about the NX on your pathology reoprt.  I believe it means that lymph nodes were not assessed.  It's likely the position of the tumor or lesion was such that no nodal tissue had to be removed and, as such, they had nothing they could analyze.  In your followup scans, they'll keep a close eye on pretty much everything around there, so you should try not to worry as much about that.  I would say don't worry, but as someone who had a 1.7cm chromophobe RCC lesion cut out in June, 2016, I can tell you that the worry might diminish, but it doesn't completely go away.

 

Babygirl05's picture
Babygirl05
Posts: 7
Joined: Oct 2017

That is very true.  Had I listened to my first set of doctors my cancer would not have been discovered yet.  I researched so much and knew that it’s best to have it diagnosed sooner rather than later.  I knew I had a lot of anxiety about things, but I knew anxiety wasn’t causing me to feel so bad.  I pushed and I got answers.  Not exactly the answer I wanted, but at least it was small and it was all removed!  

icemantoo's picture
icemantoo
Posts: 2639
Joined: Jan 2010

Baby,

 

This is why doctors meet in committes to discuss individual cases. After all they are just practiscing medicine trying to get the right answer. One day they will get it right.

 

 

Icemantoo

stub1969's picture
stub1969
Posts: 413
Joined: Jul 2016

Sorry you have to be here, but I'm glad you found us.  I, too, was stage 1.  My tumor was a little over 5 cm at the greatest dimension making my tumor a 1b.  I had my surgery last August and recovered quickly.  I was walking a lot then started to jog and pushed it a little too far.  I experienced some pain in my incision site so I took it easy for a week.  The pain went away.  I guess the moral of the story is to listen to your body--it will tell you when it's ready to push a little more.

As far as seeing an oncologist--I never have.  Some people on here will advocate for you to do this.  I guess it's really up to you and whether you feel comfortable with seeing just your urologist.

Good luck and keep us posted.

Stub

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