chromophobe rcc

Fighting75

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. 

Update

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.

stub1969

Fighting75 said:

Update

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.

Chromie

Fighting--are you a Chromie too?

Stub

Futurestar75

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.

New.Hello

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

stub1969

Futurestar75 said:

New.Hello

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

Welcome fellow Chromie

But, I would rather have met under different circumstances.  I had a partial nephrectomy on August 26, 2016 for a 5.3 cm mass at the greatest dimention.  Mine was determined to be Chromophobe, also.  As you can tell from this threat, chromophobe RCC can and does travel.  In fact a couple of our fellow chromies from this threat have passed on because of their cancer.  But, from the research that you can find chRCC usually doesn't travel until the mass is larger.  Chromophobe usually grows pretty slow, which is why it is important to keep up on your scans so that IF it does reappear you can catch it early.  I hope you are seeing a RCC specialist.  If not, seek one out.  I would think from your location you have access to some really reputable hospitals where some of the doctors specialize kidney cancer.    

You've come to a good place.  A lot of great people that will support you along the way.  Keep us updated on your progress.

Blessings and peace:

Stub

Patty R

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.

Still Collecting DatA?

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.  . 

stub1969

Patty R said:

Still Collecting DatA?

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.  . 

Welcome, Patty

Welcome--since you are posting on this topic, I'm assuming your cancer was Chromophobe also.  I'm super happy to hear that everything has been clear sailing for you since your surgery.  It's wonderful to hear that news from a fellow Chromie.  Unfortunately, Texas passed away from his cancer.  His was pretty aggressive.  When I was first diagnosed I read a lot of posts from him and gained a lot of knowledge from his posts.  Even in death he is still helping and providing hope for us.  What a great legacy he leaves!

Stub  

Oliver4

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

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

 

Oliver4

stub1969 said:

Welcome, Patty

Welcome--since you are posting on this topic, I'm assuming your cancer was Chromophobe also.  I'm super happy to hear that everything has been clear sailing for you since your surgery.  It's wonderful to hear that news from a fellow Chromie.  Unfortunately, Texas passed away from his cancer.  His was pretty aggressive.  When I was first diagnosed I read a lot of posts from him and gained a lot of knowledge from his posts.  Even in death he is still helping and providing hope for us.  What a great legacy he leaves!

Stub  

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.

 

stub1969

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.

 

Welcome, Oliver

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

stub1969 said:

Welcome, Oliver

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

Thank you, that is really

Thank you, that is really helpful~ My next scan is August 1. 

MizzouFan

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

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. 
 

Prime777time

Pathology report indicates ChRCC

I too was having extreme stomach/abdominal pain after I ate. I was bounced between my PCP and GI doctors until they finally ordered a ct scan where they found a 4.2 cm mass on my right kidney upper pole. I had an open right partial nephrectomy on May 15, 2018 (just a week ago). They only had to remove 15% of my kidney with clean margins all the way around. I just got my pathology report and have been doing my own research because I do not have my follow up with my doctor until June 27. The report indicates Renal Cell Carcinoma Chromophobe Type (4.0 x 3.8 x 2.7cm) and ”Final Margin” Renal parenchymal. I am still having pains after eating but it is a different type of pain mainly gas and digestive (most likely recovering from surgery) also the location of the pain is different after surgery. Has anyone had other treatments or surgeries after the nephrectomy? 

Thanks @stub for directing me to this page with other chromphobies!

msjax

ChRCC

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! 

stub1969

Glad you found the page

Prime, I'm glad you found the Chromophobe page.  I hope you get a chance to read through the posts here and follow Texas Wedge's advice and search for the Chrlomie page that he mentions above.  You'll get great insight about our cancer from those people.  Jax is right about the identification of Sarcomatiod and Rhabdoid features that make the cancer more aggressive.  Review your pathology report to see if they mention that.

Beyond this information try to relax about the pain.  You just had major surgery with your insides shuffled, poked, and moved.  Plus you had layers of muscle and fat cut then put back together.  A lot has happened.  Give yourself some time to heal and try your hardest to listen to your body.  It will tell you when you can do more or when you need to stop.  Gradually things get better and your strength and stamina return.  IF, however, you don't feel comfortable with the pain, I suggest contacting your doctor.

As you heal (both physically and emotionally) stick around and help other chromies.  Your journey is a wealth of information for our new members.

Stub