Chromophobe RCC - my experience

I'm glad you found us.  I, too, am a chromie.  My cancer was 5.3 cm at the greatest dimension.  I had surgery at the end of August and a four month follow-up scan in November.  Fortunately, I was NED.   I go in again on May 31st for a second set of scans.  For the next couple years I will have scans every six months then annually after that.  If you click my "name" you'll be able to see my story.  I'd also like to have you do a search of this site and read past posts on Chromophobe RCC. 

You're right, the medical literature does state that our type of cancer is slow growing, but it is important to stay on top of your scans.  It's hard to believe but on the Smart Patients site there was a recent post of a doctor that told his patient that Chromophobe RCC does not metastasize which is absolutely wrong.   

Good luck and keep us posted on how things go.

Stub 

I had a 1.8 cm chromophobe lesion removed almost a year ago.  My doc told me it was usually slow growing, rarely spread and rarely recurred, the key word being rarely.  So, there are some cases where it does spread and some cases where it does recur, so he has me on a six month scan schedule.  While I hate the anxiety associated with the scan, I very much appreciate getting them as I have a family history of abdominal and aortal issues and the CT checks those out as well.

Hi Jas,

  I was diagnosed chromophobe with an 11cm tumor in '04 and became metastatic and Stage 4 in '08. A long & winding road but still here and feeling great ("great" having been redefined somewhat, but then im13 years older now!). I second the advice to get scanned every six months rather than annually, especially considering the size of your tumor. My first met appeared 3 1/2 years after diagnosis. I was getting scanned every six months until the third year when the doc pushed the scan out to one year and that's when the first met appeared. Push for every six months for 5 years, and even then remain vigilant with annual scans.

Where are you located? I live in Pa and travel to NY to Memorial Sloan Kettering Cancer Center for treatment. Since chromophobe is so rare I think it's important for you to find a kidney cancer specialist instead of a urologist or general oncologist. And go to a cancer center instead of a private practice because they see lots & lots of everythinG and are up on the latest, greatest treatments. Plus, if you need surgery or radiation down the line everything is easily coordinated at the cancer center. We can advise you on cancer centers or doctors in or near your area. True, you are not metastatic, so there's no rush. But do it. Good to have your ducks in a row and a relationship established in case you need it. The RCC doc at the cancer center can oversee your care and work with your local RCC specialist if distance is a problem. As a rare chromie, you will find yourself a bit of a celebrity.

i hope I'm not scaring you. It's just that we've all learned to be very vigilant and our own best coaches. Deep breath. Life goes on. You & chromophobe will co-exist , or you'll never hear from it again!!  Try not to worry. We longtimers have learned that worry doesn't pay. Just ruins your day.  I  choose  to frame  chromophobe as a chronic disease like diabetes or Crohn's disease. There's no cure, but you manage it. You live with it. Stage 4 is terminal, but life is terminal. Most people have serious issues they have to deal with. Some are life threatening. This is ours. 

Good luck! Keep us posted.

I also had my nephrectomy at Emory 5 years ago.  My tumor was the same size as yours, but mine was of the rare “unclassified” type.  I will offer my 2 cents.  First, I recommend that you start seeing an oncologist instead of urologist.  Urologists are experts at removing kidneys, not experts managing kidney cancer.  I assumed mine was, but, even though he was director of minimally invasive surgery, and even after telling me I had a large, aggressive tumor, he did not order a chest CT.  He also told me I did not need an oncologist since he “got it all” and I was “cured.”

Unfortunately, there are no RCC specialists in Georgia.  You might consider what I did.  I traveled to MD Anderson in Houston for a one time consult with an oncologist that specializes in rare types of RCC.  I wanted to hear from an expert what my risk of recurrence was and what my follow-up plan should be.  Unfortunately, it was there that I learned my cancer had spread to my lungs.

NCCN guidelines are that for stage II RCC, you should have chest and abdominal scans every 3 to 6 months for 3 years and annually up to 5 years.  My insurance kept denying my scans, but my doctor was always able to convince them.

Since you also have a very rare type of RCC, it would be a good idea to get a consult with an oncologist that specializes in rare RCC.  I saw Dr. Tannir at MDA. 

Another option, which I also did, is to contact NIH.  Kidney cancer does not usually occur at your age and this can suggest a hereditary type of RCC and this could change your follow-up plans.  NIH specializes in hereditary RCC.

If you want to contact either one, let me know and I can give you more info.

 Kathy

did they give you an estimated size? they will not be able to confirm its chromophobe until   it is removed and sent to pathology. chromophobe is usually very slow growing and according to most studies usually has a great prognosis provided there are no sarcomotoid or  rhabdoid features. my chromophobe was 11.7 cm in size . i had my left kidney removed . i was released from the hospital the next morning. i was home withen 24 hours of the surgery. the gas was the worst. have him move and walk as much as possible  to get the gas to go away. the first three days were kinda hard but after 2 weeks i was feeling normal again. i went back to work after 4 weeks. i did not have any pain meds. just a pain pump that i removed at home after 3 days. it was also my first surgery ever. try not to get too nervous.

great news jas75, congrates on ned ! the words we all like to hear

Mine was chromophobe. My surgeon was pretty happy about it when he gave that information.

stub1969 said:

Chromie

Welcome, jgabrielson.  Can you provide us with some more information about your cancer?  Size and pathology results will help us get to "know" you better and provide stronger feedback.  I'm a little over 1.5 years out from my partial and have had clear scans up to this point.  I can imagine your fear right now and the waiting is almost numbing.  Stay strong and lean on your support system as much as you can.  That support system now includes us.

Good luck!

Stub

I had two tumors on one kidney, one was 3.8 centimeters and the other was under 1...I was diagnosed at PT3A N1.  they said it was quite unusual for it to have spread to the lymph nodes given the size of the tumor.  I am now seeing Dr. Pagliaro at Mayo, and he seems to have dealt with this particular cancer often, so that makes me feel better.  I was quite surprised that my first scan, post-op, showed mets.  I have 3 daughters that are in the healthcare field and they have helped me tremendously, but it really helps to have support from people who have experienced this. 

I'm being followed at Mayo in Rochester, Minnesota.