22 and officially joined the club

Kevin,

You are too young to join, but since  you did not volunteer we will try and help you. Not sure about your subtype of RCC, but at 9.8 cm it has to come out. After that you will have scans and if nothing developes no further treatment. Wish I could offer a majic pill, but we have all had the neph. and there is no way to sugar coat it. Mine was a lucky 13 years ago at a then young 59.

Icemantoo

So sorry to hear this.  Please sign up at www.smartpatients.com, they are very experienced and you have a lot of professionals there that can give you advice. I hope you have the surgery done asap and heal quickly.  Is there something causing this in your environment?  Try to eat organic if you don't already.  Get copies of all of your tests and reports and you can post if you have any questions.  Praying for you, you will get through this. Hugs n love.  Did you have a full body ct petscan?  If not, please do so.  After surgery they should follow you very closely with full body ct scans every three months.  There are several medicines if you need it. Please be sure to have an rcc specialist oncologist.  Keep us updated.  All the best to you.

I am alive said:

I'm a fellow chromophobe

Hi. I was diagnosed 11 years ago this fall, metastasis showed up 7 years ago this fall. Most chromophobes don't get metastasis - I think only about 5percent get lucky like that. Though usually indolent, slow growing, chromophobe can grow fast so you must always be vigilant. I would insist on followup CT with contrast ofthe abdomen, chest and pelvis (that's just one test) every six months post surgery for at least three years. Then move it to once a year. And find an oncologist who specializes in RCC because chromophobe is a rare type of RCC - not many urologists know much about it. The good news is that you may be lucky and never get a metastasis. The other good news is that if you do get a met, it will probably be slow growing. But we've lost two very dear chromophobe patients on this forum in the last couple of years, so chromophobe is definitely not a Home Free card. It doesn't respond to as many of the targeted drug therapies as clear cell RCC. (chromophobe is a non-clear cell RCC, there are several non-clear cell types). Being a member of this club means learning to live with uncertainty. You'll get the hang of it. Life goes on. You feel prettydarn good and you continue to smile & laugh & play & plan ahead (though in increments). Mostly Younare incredibly grateful for every single day and, looking back, you wonder how you were so blasé about it all before. Good luck! (and I second Angec's Smartpatients.com suggestion. Between these two sites you will learn everything you need to know & get your questions answered.)

Chromophobes showed response in a clinical trial I was in for non-clear cell RCC - the trial used Everolimus (Afinitor), a 10 mg pill daily, with a bi-weekly infusion of Avastin (bevacizumab). I was in it for 22 months with stability. Nivolumab (Opdivo), a new immune therapy drug, might also have promisfloor chromies. Sutent, Votrient and Torisel are also used. Heck, all the available drugs are used eventually, I guess. Some have more of a track record with chromophobes. The problem is, there are so few of us that not many clinical trials have paid much attention to us. However,that is changing. There is interest in creating more trials for non-clear cell subtypes. As always, we look to the future for more hope.

kevinli22 said:

Thank you for everybodys kind

Thank you for everybodys kind words. At least now i know what it was that i was facing better then not knowing. No point in worrying about what we can't control but rather what we can. Surgery is scheduled for the 31st.  I will keep everybody posted. 

Wishing you the best. It's a shame that you've had to battle cancer twice at such a young age.

Well, Kevin, I am sorry for having cancer 2x. Not fair~and so young.

But this sounds very treatable.

Glad there are others who have the same diagnosis who can help.

I just wanted to send you good wishes and let you know we're here for you!

Keep us informed ok?

Warmly, Jan

I am a chromophobe as well.  I was diagnosed in 2012 and had my left kidney removed – my first post-surgery scan included my chest (it wasn’t included in the first set that found the original tumor).  The chest scan showed a large nodule on my thyroid – so they remove that as well about 9 months after my first surgery.  I’ve had a few mets they’ve been watching – where my old kidney was, and two bone mets one in my shoulder and one in my hip.  I did a 24 week stint of Torisel and was then off for almost two years.  There has been a little activity recently (same spots, nothing new) and I am either going to start Opdivo or Everolimus soon.

Good luck and check this forum OFTEN – many of us have very similar experiences and you usually can get some very honest responses!

Beware of the internet it can drive you nuts!

PK