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something my doctor said

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Something I read on someone else's post caused me to have a flashback, so to speak, and I remembered something my doctor told me during my surgery consult.  It kinda went in one ear and out the other, I guess because I had so much info coming at me.  At any rate, once I had this flashback, I referred to my medical records to see if I could find what I had forgotten and sure enough, I found it. 

The reason my doctor recommended a radical neph vs a partial was because the growth pattern coupled with the location of the tumor would make a partial neph too high risk.  It seems my tumor's growth pattern was found to be endophytic, meaning it was growing into the kidney as well as out of the kidney.  It was situated in the mid and lower pole and was as wide as it was deep.  I remember the doctor saying he doesn't see that pattern too often.  At the time, it didn't matter to me.  It matters now.

Once I finished the review of my pathology report, I googled endophytic.  It seems tumors with an endophytic growth pattern are at a significantly higher risk for recurrence.  

Just when I was starting to feel stronger emotionally, BAM! 

Anyone else have this same growth pattern?  Just curious.

Sindy

sewmommy's picture
sewmommy
Posts: 14
Joined: Jan 2014

no idea on my growth pattern, but i can empathize... my surgeon told me i have a significantly higher risk of reoccurance too, and it felt like such a slap in the face!

-libby

Jan4you's picture
Jan4you
Posts: 1156
Joined: Oct 2013

Yes, it is important to learn as much as you can to be well informed and to advocate for our health.

However, if you (we) have the whole kidney removed, does this type of endyphtic tumor matter any more?

Just a thought..I would ask your doctor if it matters now that you had it removed.

 

Curious, Jan

 

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Jan,

I saw my onc today, to review my latest CT report.  While there, I asked him about the growth pattern in terms of recurrence to a kidney that is no longer there.  He said recurrence can happen in the kidney bed, the area left behind when the kidney was removed.  He said just because the tumor was removed intact with the entire kidney, doesn't necessarily mean a cell or two didn't take sprout outside the margins of the tumor.  If that were to happen, you can absolutely have recurrence to the kidney bed.  Only time will tell.  But he said that is true without regard to the growth pattern.  He said the kidney bed is one of the high points of interest after a neph, when having follow-up CT's. 

He has recommended I not wait 6 months between CT's, so I will be having chest, abdomen and pelvis CT's repeated in May.  I'm good with that!

Anyway, just thought I'd share this with you.

Have a great weekend!!

 

Sindy

foxhd's picture
foxhd
Posts: 3035
Joined: Oct 2011

It is only medical talk. Any thing, tumors included, that expand beyond a natural border, are more risky. So they took the whole thing out. Good plan. I don't think it is a big deal. Location, location, location. I guarantee that if you knew this information clearly, you would say, "Get the whole damn thing out!" Now it is done. You can live well with the just one kidney. Better than finding out that if the tumor was just inside the kidney, and that was all they took out. Then you would worry about the risks of that. I think you have a better prognosis now.

icemantoo's picture
icemantoo
Posts: 2620
Joined: Jan 2010

Sindy.

Back in the early 21st century when I had mine out they were not doing partials. I and others have survived many years with only 1 kidney although are GFR numbers may be lower. It sounds like you avoided the risk of a partail not working.

Try and look at the positive side of your experience.

 

Icemantoo

Galrim's picture
Galrim
Posts: 305
Joined: Apr 2013

Hi Sindy,

Obviously not a good factor that its endophytic, BUT, and I cant stress this enough: Its not considered as an independent prognostic factor, which is what really matters when estimating your overall recurrence risk.

If you/we start looking at dependant prognostic factors and worry over those, then there would be no end to our recurrence fears. Dependant prognostic factors are numerous and a for a large part of them not even clearly understood or documented when its comes to their "weight" in terms of prognosis.

Bottom line, its good to have knowledge about ones own case, but you need to "filter" out some of the information when considering your own prognosis. And if in doubt, ask your onc about what matters and what does not in your path report...

/G

 

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

The people before me have made much better points than I ever could . I'm not nearly knowledgeable enough to give anyone advice . I can only talk about my own experiense .

I used to worry a lot more than I do now . I've decided to just listen to what my doctor tells me is going on now and and leave it at that . I have recently looked at my scans from three years ago and they are enough to scare the crap out of anyone . But I tend to think of those scans as being a part of my past that is now over . I don't lose sleep over them .

I know it's easier for me to feel good about my situation than it is for you since you practically had to drag a doctor into his own office before he would see you after your surgery , and you don't have the benefit of frequent scans as I do to put your mind at ease . I do know that worry is not good for a person . I think you should pay close attention to what the people before me advised . I'm sure they are all good people and they know what they are talking about .

Frank

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Hi Sindy,

I have been worrying myself sick for a month. It's not good. All of you here have helped me tremendously. You have no idea. 

Every case is different. If I were you, I would put all of Nanoseconds research to good use and lower your risk by being proactive and staying as healthy as possible. How we treat our bodies and what we put into our bodies makes a huge difference. I plan on following that advice too. 

-Diana

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Thanks for all your input, guys and gals!

I'm really not freaking out about it but, it does give me pause.  More than anything, I just found it very interesting. 

Diana - When Nano speaks, I always listen.  Thanks to some research he emailed me recently, I have cut waaaay back on my sugar intake.  He's so smart and always helpful!

I have managed to cut back on my worry, as should you, Diana.  I know it's easier said than done but as with most things, time does help.  Stress, like cancer, is a killer.  And, unfortunately I'm wired to worry.  But I am making great strides!  I'm 8 months post-op and for the most part I'm back 100%.  If I didn't have a bulge the size of a Texas sized grapefruit, next to my navel, I might actually even be able to forget I had the nephrectomy.  Sadly, I think it is a permanent part of me.  Perhaps I should name it like Jojo named her tumor Wink

Happy Hump Day everybody!!

 

todd121's picture
todd121
Posts: 1258
Joined: Dec 2012

Sindy,

You didn't mention how they classified your tumor on the pathology report in terms of stage and grade? What stage and grade were you given?

Maybe you mentioned it somewhere else.

I'm just curious how this endophytic tumor affected the staging of your cancer.

You were clear cell rcc?

Todd

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Hi Todd,

My tumor was Clear Cell Varient, grade 2, stage one.  My path report says AJCC Stage pT1bpNXMX.  It goes on to say, Pathologic Staging pTNM.  Confusing as all get out!

At any rate, I don't think the endophytic growth pattern had any bearing on the staging.  But the doctor said that growth pattern can make keeping the tumor intack while removing the kidney, a bit more challenging.  

I also noticed the report says, Tumor Focality is unifocal.  I guess that has to do with it being in the mid pole and the lower pole?  I'll have to google that Wink.

foxhd's picture
foxhd
Posts: 3035
Joined: Oct 2011

sounds like a start to a country song.

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

Several jokes!

todd121's picture
todd121
Posts: 1258
Joined: Dec 2012

Stage 1 and Grade 2 has a very good (comparitively) prognosis. The numbers I remember seeing are that you have a better than 90% chance you'll never see this cancer again.

I think unifocal just means there was only 1 site (really 1 tumor). I don't think it has anything to do with location. I remember reading somewhere that some cancers like prostate cancer are often/usually multifocal, meaning that several tumors in several different locations spring up at the same time.

My tumor was also in the mid/lower pole, but it was Stage 3a. It had got it's little arms into some of my smaller veins.

Todd

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Thanks for your thoughts, Todd! 

You'd think those odds would give me peace of mind.  But for some reason my head wants to wrap itself aroung the 10% chance it will be back.  But, I'm not stroking out over it anymore.  I have learned from others like you, with worse situations than mine that I can't whine and worry my self into full blown anxiety over something that ISN'T while you all are dealing with what IS.  In fact, I've whinned less about everything after meeting you all. 

I haven't had a moment to google unifocal but...duh!  UNI means one so what you say makes sense. 

 

Sindy

todd121's picture
todd121
Posts: 1258
Joined: Dec 2012

Funny. They just don't tell us what is going to happen to us. I decided at some point to use the info to inform me about what treatment risks I was willing to take, but stop worrying about my odds because it just really tells me nothing about what WILL happen, only what MIGHT happen.

I'll just have to wait to find out what will happen.

I've never been a gambler. I like to try and guarantee outcomes. But this damn cancer really has taught me that there are major things in my life that I have absolutely no control over. So I say a prayer and take a breath and do what I can do and move on. :)

Wishing all of us here the best.

Todd

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