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Mlt1925's picture
Mlt1925
Posts: 1
Joined: Jan 2016

Hey folks,

New here...just introducing myself. My husband (well almost...) was diagnosed with kidney cancer on January 15.He'd had blood in his urine just before Christmas...i forced him to go to emerge, did a ct scan while there, was told it sounded like kidney stones, but they hadnt found any, we figured he must've passed them. A few weeks after he got a call for another ct scan, this one with radiographic dye? His Doctor called him on the following friday to let him know he had kidney cancer, told him based on his scans, it appeared to be a contained 5cm mass in his right kidney. On Monday we went to a urologist (this was booked back when we thought it was only stones) She sent him for more blood work, and a chest xray, and now a cytoscopy this coming Thursday. She also referred him to another surgeon, as she doesnt really deal with tumor removal, mostly only stones.

There are a million unanswered questions, and so little answers... We are not so patiently waiting for results to see which type of treatment will be the best.

It is nice to read others stories of success, to give hope :) and good to have somewhere to "vent" with people who understand.

Nice to "meet" you all!

 

 

icemantoo's picture
icemantoo
Posts: 2640
Joined: Jan 2010

Mlt,

 

 

The good news is that at 5 cm it was likely caught before it spread. Unfortunately the first step for a mass that size  is most likely a nepherectomy or as we affectionately call it, a neph. My Neph was a lucky 13 and 1/2 years ago. While there is no way to sugar coat a neph, it definately beats the alternative. Wish I could say something to make the cystoscopy somethng to look forward to, but it is better once it is over.

 

 

 

Icemantoo0

Allochka's picture
Allochka
Posts: 657
Joined: Nov 2014

Hello!

I'm also here for my "almost" husband :-) - because of the man I love, my partner of many years and farther of our 8 month old daughtef :-) It is very hard to worry about our loved ones. But you are in the right place.

aas Iceman said, 5 cm us a good size, spread is not likely, and for kidney cancer that means that treatment will be over after curatve surgery. 

Good luck with tests and keep us posted!

Alla

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

Welcome to the club that no one wants to join! 

This opening line is how most newbies are greeted when joining the forum.

From experience, I can tell you that you are in the right place for information and assistance regarding your "almost" husband's cancer. The folks here are awesome and so very knowledgeable. 

Be well friend.

 

Nancy

foroughsh's picture
foroughsh
Posts: 650
Joined: Oct 2014

The best and usually only treatment a kidney cancer patient needs is nephrectomy,  contained 5 CM tumor is a good candidate for this treatment and you can be hopeful that he needs no more treatment after neph.

Forough

 

 

 

jason.2835's picture
jason.2835
Posts: 331
Joined: Nov 2014

Mlt1925,

The first and most important rule that I can communicate is this:

DO NOT GO BY STATISTICS ON THE INTERNET!!!  If you trust everything you read on the internet, the Nazis got to the Moon and Abraham Lincoln was abducted by aliens and is still flying around up there.  

I sometimes tell newer members this.  Many people go online immediately and start looking up kidney cancer information.  While some of it is good, many of it is outdated and difficult to understand.  

The issue with kidney cancer is that it's "common but not common" and there are not a TON of doctors who specialize in it.  A lion's share of research money goes to the "Big 3" of lung, breast and prostate cancer (rightfully so), and some of the other cancers kind of get swept under the rug.  

The most general rule I have found with RCC is that it can be a little bit different for everyone.  Find a doctor who understands this and knows that RCC is not "one size fits all."  This will pay dividends once the tumor is out and a pathology report is obtained.  This will tell you the type of cancer (there is even a 10% chance it could be benign!) and will likely give the doctors a game plan going forward.  Usually, surgery is the only treatment is the cancer has not spread.

His tumor is on the manageable side so surgery will likely be the first option.  Trust me when I say it feels GREAT to get the beast OUTSIDE of your body.  All of the apprehension that he will feel about surgery (esp. if he hasn't had before) will melt away in knowing that it is getting taken OUT.  "Better out than in," as Hagrid from Harry Potter said.

- Jay  

APny's picture
APny
Posts: 1500
Joined: Mar 2014

So sorry you have to be here but you will get a ton of good information and support. As said, 5 cm is fairly small, in fact it may even qualify for a partial nephrectomy where most of the kidney can be saved. The most important thing is to go to a surgeon who specializes in kidney cancer. A urologic oncologist for instance with lots of experience. Whatever they recommend, seek a second opinion. It's very important. A urologist may not be experienced enough in kidney cancer and/or partial nephrectomies. That's why it's a good idea to get a second opinion. Best of luck to you and your partner and hopefully this will soon be behind you. Stage 1 is a good place to be if you have to be there at all, and prognosis is very good that surgery will be the end of it.

Jan4you's picture
Jan4you
Posts: 1168
Joined: Oct 2013

Glad you found us~know that we'll walk this journey along side you if you want us to.

I learned early that kidney cancer is most likely contained in kidney. Some get partials

leaving the rest of the kidney, others get radical=whole kidney is removed.

My tumor was just over 4cm and I am doing great 2 years later!

I did not have a bad time recovering because I used the lumbar velcro wrap to support

the abdomen upon leaving the hospital and even in bed. That helped me get UP from chairs

and bed without too much stress/pain. It cut down on needing pain meds as I put dry ice

packets inside my lumbar wrap near the incisions (robatic, laproscopic surgery).

 

All abdominal surgeries use GAS pumping up  the abdomnial wall so the surgeon can SEE.

BUT that gas gets trapped, usually at the shoulder and its painful. It does not mean there is something

wrong, but just trapped. I  waved my arms a lot, walked and eventually it finds its way out.

 

BUT you cannot rush your recovery with no exercise (except walking) for 1 month.

Take awhile to get your strength and stamina back.

BTW: I think you are a very cute couple!

Good luck and remember ask as many questions that you  need to ok hon? I was so  thoroughly prepared

from being on this site before my surgery. Good people here who care hon!

Hugs, Jan

 

Jojo61's picture
Jojo61
Posts: 1278
Joined: Oct 2013

Welcome, but sorry that you have to go through all this to find our group.

You already have received some great advice. It is scary to hear that news, but remember, it will probably be resolved with surgery.

Hang in there - and remember we are here to support you. We love our caregivers!

Hugs

Jojo

mrou50
Posts: 389
Joined: Mar 2013

This is a great support network and the people here have all been where you and your soon to be husband are now.  As others have said don't trust everything you read on the web.  Make a list of questions for your doctor that you want answered. You guys are fortunate that you caught it chances are your husband will need a nephrectomy or patial neither are pleasant but they are necessary.  Don't be afraid to ask questions on this site, and more importantly don't be afraid to vent that is what we are all here for.

 

Mark

Pandabear1011's picture
Pandabear1011
Posts: 110
Joined: Jun 2014

Welcome...My tumor was 6 cm and a Stage 1 and I am doing great nearly 2 years out. 5 cm is fairly small and stage 1 is a good place to be. Keep us posted. We are here for you....Panda

hardo718's picture
hardo718
Posts: 767
Joined: Jan 2016

What a way to "meet", huh?  You've come to the right place for sure.  You'll get lots of great advice from people that really know what they're talking about.  We've each either been through it ourselves or are partnered to someone who has been.  I'm 3 years out and wish I'd known of this forum before my surgery, I know it would have helped so much.  You are never alone here, which can be very comforting when the questions pop in your head at odd hours or the anxiety rears it's ugly head. 

I would agree with many here, get a couple of opinions, make sure you're comfortable with your surgeon and the type of surgery to be performed.  Mine was about 3cm, "Bob the Blob" as I refer to the beast, and my doctor did a partial nephrectomy via the DaVinci robot.  This type of surgery can be dependant on the size and location of the mass, and of course whether or not the surgeon is comfortable performing that type of surgery.

Things I've learned?  Internet searches can be scary, filled with horror stories, so tread lightly with your searches.   Most importantly, know that there IS life after cancer!!  It's not necessarily a death sentence. 

I'll keep you both in my prayers and keep us posted with updates.  Good luck.

Donna~

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