Bilateral RCC...updates - first surgery complete

Jan4you said:

Well, I can already tell you

Well, I can already tell you are a special person: have an open and generous spirit and willing to listen and learn. YESSS, WE will be here for you all the way if you choose us to be in your life. Hope you have outside support. And so glad you are already receiving such wonderful, helpful advice.

Is this your first surgery? 

I can honestly say, after 4 abdominal surgeries, 2 open incision, 2 laproscopic/robatic, I found it easier to recover with Lap/robatic. I also have other medical issues so I was glad my recovery and prognosis was good! Nearly 4 years, NED ( No Evidence of disease). Because my stage I tumor was only 4cm, I still had to have a nephrectomy due to the position of the tumor near the blood supply. 

I can help you with more information regarding what to expect, how to prepare, how to best recover if you like me to. 

But know that I appreciate how wonderful you are, so stay and we'll help you. Trust your surgeon. 

Let us know what you need. Here to help!

Sending you calming vibes of serenity and HOPE for the best recovery!

Hugs, Jan

Jan - what a wonderful message, thank you!  Your kind words are so nice.  I am a single guy - but have a lot of support from family and friends...I know that they'll help me get over this mountain.  I'm thankful for everyone that's in my corner as I begin this fight.  

So happy that you're 4 years NED...what a great feeling that must be!  Keep being well.  

I am still waiting on next steps and likely a couple of more opinions.  Luckily I am in an area of the country with access to great medicine/care.  Hopefully the plan starts falling into place soon...as I have said before, I just want this crap out!  I'll get there eventually with careful research and planning.  The tumors didn't grow overnight and they won't be removed that way either.

The only other surgery that I've had was a gallbladder removal, two years ago...it was laparoscopic and the recovery was uneventful.  

I welcome any insights and advice that you have.  Thank you, thank you, thank you!  So happy to have found you and others here.

The journey continues...

Angie1496 said:

LM,

LM,

Welcome to the club no one wants to be in!   Sounds like you are part of an even more exclusive branch that some of us!!  I hope you have good results from your visit to the specialist. I live in a small town so we have to travel a good bit for a research or large facility.  I was lucky to get in with a really good Urologic oncologist.  I’m almost 7 weeks post neph.  This is a great support group with a lot of wonderful people! I’m glad you found us before your surgery. I was so overwhelmed I didn’t even think about support groups until after surgery!  It’s nice to have a place to come where everyone knows what you are thinking and feeing that can offer advice on what to expect etc

 

Angie

Hi Angie - thank you for dropping by and leaving a note.  The club no one wants to be in - spot on there!  

I am glad that I found this group as well...lots of advice, insights and support.  I'm confident that I can beat this and give back to others like all of you here.  Having bilateral RCC makes the mountain higher...but, I'll get over it.

Much luck for your continued good post-neph recovery!

Update - feeling some great relief today...a plan is beginning to fall into place.  I met this afternoon with the chair of urologic oncology at Upstate Medical University who is also a known researcher on genetic cancers.  I emailed him last evening and he got back to me immediately (himself) and got me in to see him today!  Wow, I couldn't believe that.  He completed his fellowship (6 years) working alongside kidney cancer leaders at the National Cancer Institute in MD.  He's performed hundreds of successful kidney surgeries and is current on research and methodologies.  He's right in my backyard at Upstate and has also successfully managed bilateral kidney masses in the past.  I'm feeling good.

It looks like we'll be scheduling a partial neph on the right kidney to remove that 3cm mass first.  The mass will be sent to pathology to determine the plan moving forward for the left kidney mass depending upon the right mass presenting as genetic or environmental (staging, type etc.).  Hoping genetics are not involved.  

The care, concern, compassion and bedside manner the doc emanated was unlike anything that I've received from any other specialist I've ever met with.  The doc spoke in layman’s terms, was very thorough, calming and answered all my questions.  He was confident and made me feel very comfortable.  You know when you just have that "feeling" about someone?  I know this doc and his team are the best for me.  I'm lucky to have found great care, quickly! 

I'm young, we caught it early, no mets and as of now all signs point to success.  I know that there is a long road ahead, but I'm confident that all will be fine in the end.  Get those damn things out of me!

Thanks to all for your continued guidance and support!