chromophobe rcc

T1ffanyz said:

KC@30

I have a similar story, stomach pain, side pain, hospital visit, tests... They told me it was due to my endometriosis. Then it was my IBS, in July they found a mass, didn't tell me! Issues had me in ER every month, in feb of this yr dr said the mass on your kidney is growing.  I said what mass!   So MRI showed mass clearly ball was set in motion I traveled to ny to 1st urologist who wanted to do radical nephrectomy.  I refused due to sisters history of kidney issues.   He referred me to dr Paul Russo a colleague at memorial Sloan Kettering cancer center.   met dr Russo a month later and my surgery was scheduled a Month later Lille July 11.  I flew back on the 9th. Had test, pre op and surgery on the 11th. Had a partial nephrectomy dr Russo saved 95% off my kidney and a week later I found out it was cancer. They keep telling me I'm too young that its a 50 year old and up disease.  That it could have gone undetected for years. I feel great. I move slower have some discomfort but I'm healing 

 

best of luck to you. I think I'm learning cancer is unpredictable it no longer discriminates against any age. 

Hello,

I read your post from 2013. I wanted to check in on you to see how you were doing. I just had my right kidny removed due to a 10cm tumor. The pathology report stated that it was contained to the tumor. How was your recovery and are you still cancer free? Hope to hear from you soon. Peace &Blessings to you and yours.

Texas_wedge said:

Chromophobe database

Good morning and welcome.  Yes, there are many of us and there's a lot we will be able to tell you that will be helpful.  First of all, there are many threads about it here already - if you go, say, to the top right corner of the screen and use the search facility, you should find a lot of them,  e.g. a thread entitled "RCC chromophobe"  with (at last count) 77 posts in it.

I'll give you some answers later, but first some info from you would be good.  I'm building a database about chRCC and would like to add your data to it if I may.  The information that others have kindly given me (a few dozen of us so far) includes:

Age (now) date of diagnosis, gender, ethnicity, location, the stage, grade and size of your tumor (all facts that should be in your pathology report - after two weeks since your op, you should be able to get a copy of that now) and the side;  also your blood group and brief detail of your treatment (I gather that that's only surgery so far and I hope it stays that way.  If you had a "sarcomatoid" component reported I would want to know that too.

I shall be most grateful if you could give me that information and I look forward to giving you information that will be of help in managing your own situation from now onwards.

Hello

I had my right kidney removed 8/30/16 along with a tumor 10cm. It was contained..no mets. I only had pain once I took a flight out of town then the pressure was felt. I then went to my Dr. I've been doing research since i received my pathology report..T2b chromophobe renal, well encapsulated mass, sarcomatoid features not indentified..benign adrenal tissue no carcinoma seen. Not sure what a lot of that means but I sure could use some good news. I am African American,41 yrs old, I live in Georgia I have been a vegetarian for 2 yrs. I weigh 115lbs very active person. I hope this information helps. My Dr says if theres a cancer to have it would be this one. He says its a good one to have. Tends not to spread & once removed it doesn't return. Whats the truth in this?? I need peace. I feel like my diagnosis was a mistake. Am I in the twilight zone. Ive been juicing & taking many supplements for prevention soursop capsules, coffee enemas, bitter apricot seeds. I would appreciate any assistance you can offer. Peace & Blessings

Texas_wedge said:

Chromophobe database

Good morning and welcome.  Yes, there are many of us and there's a lot we will be able to tell you that will be helpful.  First of all, there are many threads about it here already - if you go, say, to the top right corner of the screen and use the search facility, you should find a lot of them,  e.g. a thread entitled "RCC chromophobe"  with (at last count) 77 posts in it.

I'll give you some answers later, but first some info from you would be good.  I'm building a database about chRCC and would like to add your data to it if I may.  The information that others have kindly given me (a few dozen of us so far) includes:

Age (now) date of diagnosis, gender, ethnicity, location, the stage, grade and size of your tumor (all facts that should be in your pathology report - after two weeks since your op, you should be able to get a copy of that now) and the side;  also your blood group and brief detail of your treatment (I gather that that's only surgery so far and I hope it stays that way.  If you had a "sarcomatoid" component reported I would want to know that too.

I shall be most grateful if you could give me that information and I look forward to giving you information that will be of help in managing your own situation from now onwards.

Hi Texas_Wedge. Are you still collecting data?  I AM A 62 YR OLD Caucasian FEMALE, DIAGNOSED WITH A 2.9cm RCC tumor IN 2013, at the age of 58.  The tumor was located in the inner curve of the kidney where the major arteries are connected.   IN April 2014, 20% of my Right Kidney was removed.  All good since then, with annual checkups at MD Anderson.  . 

I am alive said:

ANOTHER Chromie!!

When I found this site a year ago I felt ALONE, there were so few chromophobes. Lately it's been raining chromies!  Right off the bat I want to reassure you that there ARE drug therapies that can be effective with chiromophobe. Just not as many as with clear cell RCC. And now with drugs being delivered in combinations, headway in immunotherapy and new drugs coming on the market, there will be more options in the future. Yes, surgey is the best and surest solution. I'm currently in a clinicAl trial specifically for non-clear cell RCC, of which chromophobe is a sub type, in which I get an infusion every two weeks of bevacizumab (also known as Avastin) and I take a daily 10 mg pill of everolimus (also known as Afinitor). Been in the trial for a year so far with met stability and some resolution. Didn't get my first met till four years post nephrectomy, and that was removed surgically. Three years later another met showed up, and another, and another, and that's when I started drug therapy. I hope you have an oncologist who specializes in kidney cancer. If you don't, find one because chromophobe is so rare, you want to have a doctor with deep experience with RCC, who already knows which drugs tend to work with chromophobe, and which don't. And whats coming down the pike. People here can help you find a specialist. follow Trevor's advice and read the past posts on chromophobe. Then let's talk. You're still in shock, but that will wear off. You've landed in a good place here. We're all in your corner.

I'm a chromophobe kidney cancer survivor. Any data out there would be greatly appreciated.

Oliver4 said:

I was diagnosed with

I was diagnosed with chromophobe kidney cancer stage 3. They said they got it all and no signs of mets. However, the tumor was huge 24 cm. Any data out there on recurrence would be appreciated.

 

That's a pretty large tumor, so you'll need to make sure you are diligent about follow-up scans.  Are you being seen by an RCC specialist?  If not, I'd encourage you seek one out.  Even though they said they got it all they're only talking about visible cancer.  It's those little "unseen" buggers that cause problems.  But with active surveillance IF anything pops up you'll be able to catch it early and take care of it.

Obivously with a tumor the size you had, chances of reoccurance increases---but Chromophobe RCC is considered less active (Review your pathology report and be familiar with it.  Some terms listed may mean a more agressive subtype).  I know you are scared and I don't mean to raise your level of anxiety.  Continue to lean on us with your fears and questions.  We'll do all we can to help.

Take care,

Stub

Oliver4 said:

I was diagnosed with

I was diagnosed with chromophobe kidney cancer stage 3. They said they got it all and no signs of mets. However, the tumor was huge 24 cm. Any data out there on recurrence would be appreciated.

 

Oliver4, Stub 1969 is spot on on all his points. I had a 16cm Chromophode tumor, metastatic cancer was found during surgery, to small to show up on a CT scan. My path report said vast majority of tumor small nuclei, low grade and uniform, however small portion enlarged hyperchromatic and highly atypical, nuclear grade 4. I believe the metastatic cancer came from the Grade 4 portion and not the low grade portion, two top chromophobe onogolist agree. I went to a cancer doc that was not a RCC specialist. Three months later the cancer showed up on a CT scan in lymph nodes. My doctor told me that there is no value in removing lymph nodes, that is correct for clear cell patient not so for chromophobe. I stayed with this doctor for two years as we watched the nodes grow. I found a 7/12 CSN post from "I am alive" addressing her RPLND surgery in NYC. I printed it off and got a new doctors. My new cancer doc reached out "i am alive" doctor who comfirmed that RPLND surgery was correct. My new uroligist refered me to a top RPLND surgeon much closer to home, he strongly agreed that surgery was the right course of action. That was two years ago and I have had clean scan ever since. Everyone is different so I only speak of my experience, my low chromophobe does not show up on a PET scan, but does show up on a CT scan. Stay informed, dont let them treat you like a clear cell patient, there is great value in surgical removal of Chromphobe. Thx i hope this helps. 
 

Hi Prime777time,

I had partial nephrectomy at the end of February and was home from the hospital within 24 hours and back to work at 3 weeks. As for pain, everyone's situation is unique so try not to compare.

My pathology report shows Chromophobe stage T3NxMx - due to focal extension into perinephric fat, 2.3 cm ... I have a 6 month follow up scheduled for bloodwork in September and a scan scheduled at 12 months in March (a little anxious about this). 

Since Chromophobe is considered rare (only 5 - 6% diagnosed per year) and usually less aggressive, most treatments beyond surgery benefit those who are diagnosed with Clear Cell.  It is my understanding that Sarcomatoid and Rhabdoid features may make Chromophobe slightly more aggressive...in my pathology report it stated "absent" for both.

In the coming years it is important to stay vigiliant and remain faithful to your follow up appointments--others here can give you more great information and advice.

Hope you feel pain free soon and get your questions answered at the next appointment.

Best of luck!