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Bilateral RCC

Posts: 48
Joined: Oct 2011

Hi all! I've been lurking for a few days and thought I'd toss my hat in the ring. I'm really impressed with how much most of you know
about your cancer! Kudos! About all I can say about mine is "The craps out of me, I'm feeling good and it better not come back."

I have congestive heart failure as a result of going into V-Tach twice at home for no know reason. My EF is 10% and that makes any surgery extra risky. I need a heart transplant but I opted for a clinical trial heart assist device called C-Pulse and am now happy to say I'm #19 out of 20 in the world to receive it.

After surgery for the C-Pulse, blood test showed my liver not working. Had a sonogram on my liver and gallbladder. Radiologist came to my room and said my liver and gallbladder were fine but that I had a rapid growth density on my right kidney. I asked "What does that mean?" He said "I can't really tell you any more but there will be a Urologist in to see you." Great! So the next day 2 Urologists show up and tell me it's probably cancer because it's a dense growth, but it's good they found it early 2.5cm, so he will take it out and all will be good. Yeah!

So while were making this discovery, I'm also having problems with A-fib. I had to be Cardio-verted 4 times in 4 weeks while waiting to have an ablation. A week before the ablation the EP doc wants a CT of my heart and the Urologist wants a CT of my abdomen and pelvic area. YEP! I also have a 3cm mass on my left kidney! Great! Get the ablation and then 1 of the 3 wires from my heart to an ECG that I carry for my C-Pulse goes bad. Another surgery to replace the wiring embeded in my abdomen. Goes good, I'm home 3 days and wake up with puss running out of my abdomen where my pigtail comes out. Back to the hospital to get that cleared up.

Through all this I'd seen my Urologist a few times in the hospital and he was all positive and gung ho to go. My surgeries were scheduled for 6/20/11 and 8/8/11. I know this is long but it all has to be told.

Posts: 48
Joined: Oct 2011

So as I'm getting pumped full of Vancomyacyn. My 1st kidney surgery is 2 weeks away. My Urologist comes in at 8pm and starts asking personal questions about my family and my religious beliefs. I ask "What's this all about?" He says "I feel that you will most likely die during the procedure because he expects the need for atleast 2 transfusionsand that my heart won't be able to handle it. I just want you to know that you would probably live for 2 years without the surgery." SHOCK, GASP,WTF! I said "Doc-My only chance for survival is to get this crap out of me so that's what your going to do. And I can't think of a better place to die than sleeping on your table. That's alot better than going home and waiting to die."

Both surgeries went great, cauterized the heck out of things, 0 transfusions. Healed up great. Have my 12" twins. X-Ray and CT's in 6 months. Thinking I'm cured and hoping you are too! Is there any body else on here who has bilateral RCC? HAPPY DAY TO ALL! Alan

KatfromFlorida's picture
Posts: 66
Joined: Aug 2011

Dear Alan:

Wow, what a journey you have been on. I am so glad to hear that you are doing well despite your doctors grim prognoses .... Being a big believer in guardian angels I would have to say that you have many more than one !!! :) Now your a survivor with the scars to prove it....
I lost my younger brother to a massive heart attack 5 years ago at age 42. Im glad to hear that they are making advancements in how they treat heart disease and hope for the very best for you and your family and sending many prayers your way for continued good health and continued healing.....

My best

lbinmsp's picture
Posts: 266
Joined: Jun 2006

I have not had bilateral RCC - one side was enough. You truly have a guardian angel looking out for you - you are truly a walking miracle! I love your attitude about the surgery! We've got to make our own decisions regardless what anyone else says (your doc). And yes, I think dying on the operating table (sleeping soundly and feeling no pain) would definitely be the choice over just going home and waiting for it to happen. I admire your courage! Keep fighting the good fight. Let us know how you're doing from time to time!
God bless!


Posts: 48
Joined: Oct 2011

All I can say about having both sides done is that it dosen't get any easier the second time!

All in all I guess I'm pretty lucky as I healed right up and don't have any lingering problems as some do. I still have the random twinge of pain along the incisions but it's getting better. It will be nice to get my ab. strength back some day.

I guess I'm a survivor, so far. I really haven't had to put up a fight and I hope I never do. My heart goes out to those of you who have had to endure the nasty therapies and reocurances. I hope that I never have to walk in your shoes.

My best wishes for all. Alan

lbinmsp's picture
Posts: 266
Joined: Jun 2006

love your nic

garym's picture
Posts: 1651
Joined: Nov 2009


You have a great attitude and perspective on this journey that we share. I'll bet you have a wicked sense of humor to go with it, there must be a story that goes with the growler tag, care to share? Maybe LB could be persuaded to provide you with an appropriate pic.

What do ya say LB,


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