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Multiple partial nephrectomies

3timepn
Posts: 4
Joined: May 2013

anybody out there undergo multiple robotic partial nephrectomies? I just had my third last week, and am looking to compare notes...

Djinnie's picture
Djinnie
Posts: 947
Joined: Apr 2013

I have had two robotic surgeries on the same kidney. My first was robotic radiofrequency and the second was partial nephrectomy. So the first time the tumour was burnt and of course the second you know about. Recent tests show that, thankfully my kidney is still fully functioning.

 

DjinnieDjinnie

3timepn
Posts: 4
Joined: May 2013

I had first right (2009) then left (2012) and now right again (2013). They say I am disease free but it is somewhat worrying...

Djinnie's picture
Djinnie
Posts: 947
Joined: Apr 2013

You have been through a tough time of it. Were the tumours on your right kidney both in the same area? What about the 2nd tumour on your right was it spotted when they discovered the left one? 

I had my first tumour removed in 2003, I was advised that they had got it all, and i had reassurance of regular check ups. I moved from the States back to Europe in 2007, and continued with regular checks. In 2009 after having a scan for peritonitis, my records stated that there was a scar on my right kidney.  This comment was to affect the judgements made on two later ultrasounds. It was not until 2012 that is was discovered that the scar was in fact a tumour, because of course it had grown substantially by then.

My Surgeon has stated that he had removed it all. I can only hope that he has but there is no guarantee when it comes to cancer. All we can do is keep up with the blood tests and scans and be watchful. It does shake your defenses when you discover you have cancer, I have also had oral and bowel cancer. It can tear you apart if you let it, but stress also helps to create a nice homely environment for cancer to grow in, so we are as good as posting a welcome sign at our door.

I would be lying if I said I don't think about the possibility of a recurrence, but without those thoughts you would not be vigilant. I do practice a lot of therapeutic tequniques though to avoid stress and keep my mind balanced, I think that helps me a great deal. Are you using any relaxation methods to help you in any way?

All the best

Djinnie

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

The only guarantee your surgeon can make with any validity is: "I think we got all that we could see."

There are small tumor cells and/or clumps of cancerous cells circulating (and hiding dormant) in the body. Many of them may find a "safe haven" in the bone marrow.  That does not mean any of them will eventually lead to metastases.  But they are certainly there nonetheless.

Djinnie's picture
Djinnie
Posts: 947
Joined: Apr 2013

Thank's Nano, not something a lot of surgeons consider it seems.  All we can do is stay vigilant and try to lead a healthy lifestyle.

Djinnie

Texas_wedge's picture
Texas_wedge
Posts: 2803
Joined: Nov 2011

Yes, it seems strange how ingrained that phrase "got it all" has become.  This, even in the face of the widely adopted expression NvED meaning no visible evidence of disease.  [I have strongish feelings on the topic, having been thought to be NED after a second op, for a recurrence, only to find out within not many weeks that I had further recurrences in several other locations.]

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Texas_wedge
Posts: 2803
Joined: Nov 2011

Big CSN performance problems here - site seemed to be down or too busy - I've made postings successfully on SP while trying to get this post to go!

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Texas_wedge
Posts: 2803
Joined: Nov 2011

!

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I really didn't want to hear that Nano, but I intellectually understand your point.  Emotionally I want to react to it but . . . C'est la vie!

Vigilance and life style alteration are decidedly in order.  What we did before helped create the problem.

Obviously change is requisite.

The momentary euphoria and great hope embodied in "we got it all," is a much desired feeling, and maybe they did get it all, but letting down the guard is foolhardy.  Thanks for helping me keep focus!

Michael

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Michael,

I never wish to be the one to bring anyone down.  But my philosophy is "knowledge is power".  I just wish I had been told not to trust my doctors when they had said to me "you are cancer free" (NvED) after my full nephrectomy back in May 2010.  Yes, I remained NvED for another 2+ years after that.  But, believe me, in hindsight I would have done a bunch of things differently had I understood that I was at high risk for graduating from stage III to stage IV (which I did with "honors" this past July).

That is why I am always happy to share what I have learned since then.  Remaining in ignorance is just not the most effective way to deal with this disease in the long-term.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I wanted to cling to the dream, but I am no one's Pollyana!  Nor am I Eeyore!  As you say, knowledge is power!  I do appreciate your words!

Cool

As long as I'm breathing I'm fighting! As Long as I'm fighting I'm good to go!

3timepn
Posts: 4
Joined: May 2013

the third was not in the same place as the first... When they spotted the second on the other side, the third was too small to categorize. They didnt even include it in any reports, but when they caught it six months later (it had grown), they went back over the films and said that it was visible in the earlier scan (all three were removed between 1 and 2 cm and there has been no involvment of blood vessels or nodes, thankfully). After each one I was assured that the chance of recurrence was just a few percent, but after the third time, the assurances aren't that reassuring...

 

I actually consider myself insanely fortunate, as even the first one was caught by accident (during a scan for a kidney stone, which everyone says has no connection at all to rcc). It's only six days since surgery #3, and I am up and about at home and pretty much off meds. But there is a bit of pincushion syndrome (I see I am not the only one who calls this "whack-a-mole" therapy!).

 

My doctors have all said there is nothing to do but keep vigilant (and they have obviously done a great job so far...). But does anyone out there have any info about diet, or something to avoid, etc.? Experience is the best teacher...

 

On my end, if anyone needs to know what to expect before, during or after a partial robotic nephrectomy, I suppose I qualify as a reluctant expert, from all angles (literally and figuratively)...

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