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Single kidney now has cancer - anyone?

dlrepic
Posts: 64
Joined: Nov 2010

morning,

I'm new to the Kidney board - been on Esophageal (grandfather, father, and 2 uncles) and testicular(husband) for a couple years.  My husband was born with a single kidney, had testicular cancer 9 years ago and kidney cancer was gound on recent CT scan.

The tumor is in a precarious position between the renal artery, vena cava and liver and surrounded by scar tissue from previous chemotherapy. 

Does anyone have experience living with a partial kidney? Chances that it has spread? Kidney transplant from family member possible??

too many questions

Thanks

Danielle

 

icemantoo's picture
icemantoo
Posts: 1483
Joined: Jan 2010

Danielle,

There are a few posts on this board that address bi-lateral Kidney Cancer which may give you some ideas. A lot depends on the size of the tumor and where it is located and whether the tumor is small enough for a freezing or RFA procedure. Definately seek out an expert if you have not already. It sounds like several options were already discussed with you.

 

  Icemantoo

Blueraidermike
Posts: 16
Joined: May 2013

Danielle,

There are some of us.   I had a partial open 13 weeks ago.   In my case, they took a chance and put me on Votrient for 5 months to shrink the tumor to improve the odds of success.   It was a bit of a risk, but since I was healthy (other than the cancer) its what we all agreed too.  The tumor got about 20% smaller and was dying on the inside but since it was close to renal artery we didn't wait anylonger, the doctor felt like he had about a 90-95%% chance of being successful and of course, it worked out.   My creatinine levels are steady at 1.2 which is what they were before the surgery.    

His docs will have to run CT of the chest, upper and lower abs, CT or MRI  of Head and a bone scan.  My cancer had already spread to my lungs, so this wasn't curative, but it does give me a chance to take as many swings as possible.   I am intering the Niv/Ipi clincial trial, my first infusion is May 28th.   

You may want to identify the best surgeons to do this - find one who has done this before, make sure their is a level of comfort.   I am receiving treatment at BIDMC in Boston, its integreted so the surgeon and the ONC are all on the same team.   Dr. Wagner at BIDMC did my surgery.   I know Cleveland Clinic had performed a  few of these successfully as well.   

Mike 

 

dlrepic
Posts: 64
Joined: Nov 2010

Mike, Were you born with a single Kidney as well?  My husband had a chest/pelvis/abdomen CT as part of his TC follow-up, that's when they discovered the tumor.  He had a PET Monday that showed that none of the old lymph nodes/necrotic tumors from the TC are active.  However, I do understand from reading that kidney cancer doesn't always show up with PET, however, I have no clue if that means metastatic disease or just the kidney tumor - ok now I've confused myself.  I've been taking care of at least one family member with cancer for the last 9 years and I'm tired.  Thought after I got mom through the breast cancer I'd have a break.

 

We live in Oregon and they are doing the surgery in Portland.  We have Kaiser health insurance, so can't really go out of network.  The surgeon did his orchectomy in 2004, and he's arranged for another surgeon as well as a vascular surgeon to assist, so we feel comfortable with that.  Are you still on the mend?  Dr told us yesterday ~8 weeks for recovery.  The real problem is location and additional scarring from TC, so they are worried about the kidney.  Our daughter is the same blood type and keeps asking if it's time to donate - our family joke is that we had her to be his kidney donor, however she was 6 when we found that he only had 1:)

 

Danielle

 

Blueraidermike
Posts: 16
Joined: May 2013

I lost my right kidney as a child - different cancer.   Felt like I was being picked on a bit when I learned 47 years later I have it in my remaining kidney.   I am 13 weeks post op - I am almost back to normal, in fact just go back from a 45 minute jog.   I was pretty fit going into the surgery (triathlete, lots of outdoor winter sports) so I can bike and run (slowly).   My only complaint is my abdomen on the surgical side is a bit distended; and sometimes tender.   It just takes time for everthing to heal.   

My recovery was a bit slowed by an extended stay due to some complications, so I think 8 weeks is pretty standard.    As soon as possible, get him walking.   You will here that in the hospital but also once you get home plan on lots of walks, extending them each week.  

 

Kaiser has hospitals and doctors all over the West, so you have more options than just in Portland, OR.    

You can do this!

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

That's quite an achievement Mike, not many could match you, even without having had your history - my hat's off to you!

Blueraidermike
Posts: 16
Joined: May 2013

Thanks...Having just the one kidney really motivated me growing up.   I felt like I was given such a gift as a child.   Funny thing on my post - I didn't lose my kidney; for some reason that sounds to me like a misplaced it. - it was taken!

Its been interesting this time...I am still trying to remain thankful.   I am a blessed man. 

dlrepic
Posts: 64
Joined: Nov 2010

Thanks for the inspiration.  He has always ran and played soccer, but the neuropathy has started to get bad, but I think I can get him walking - or the cattle prod can:)  Foot in Mouth

He's more worried with being off work for 8 weeks than the surgery, but, besides the TC he's been very healthy, so when he doesn't feel good it's more difficult.  I will introduce him to the forume at some date to read all the great personal stories.

 

Also, what type of kidney cancer did you have surgery for?  Did they know type before removal?  Or was it an open biopsy/surgery all in one?

 

Thanks again

Danielle

 

Blueraidermike
Posts: 16
Joined: May 2013

We did a biopsy to confirm the cancer.    It was not big deal - when you have tumors this big on the kidney, its like hitter the barn door.    The first cancer as a child was a neurou blastoma, another reason for doing the biopsy was to understand the type of cancer I have now and if it was related to the previous cancer - it wasn't. I then did 5 months of Votrient to try to shrink the tumor before surgery. 

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

In 1966 my mother (born with a condition called horseshoe kidneys) had destroyed one kidney with stones and most of the other. She underent horrific surgery and had a radical on her left kidney and a partial on her right. She lived from 1966 until 2001 with a little more than half a kidney.  That's the only information I have.

 

I know there is hope. Otherwise, I am out of my league here.

dlrepic
Posts: 64
Joined: Nov 2010

My husband is going in Thursday, June 13th for a patial on his right kidney.  They hope to save at least half and state that he can live normally.  Since he had testicular cancer 9 years ago, not sure if "normal" is the appropriate word. Undecided

Limelife50's picture
Limelife50
Posts: 410
Joined: Nov 2011

I am down to about what i figure to be about 90% of 1 kidney due to RCC and i am doing fine,i bike ride about 75 miles a week and walk another 20,not quite the same super Mike before i had to deal with this crap but i am pretty damm close.

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