Chromophobe RCC

en8236 said:

I was told 7 years back

I was told 7 years back during my diagnosis that surgery is the best possible way-forward if situation permits. I was also told traditional grade has little to do with the progression for this sub-type, but they still do grading as this is the only established grading mechanism. What I gather is, this being so rare a sub-type, nobody can confirm right and wrong. I wish I could tell you don’t do much research in the internet, but I do the same, although I can feel this works as a negative spiral sometime... ending up frustrated without getting a definitive answer. Anyway... all the best wishes from a fellow ChRCCist... hope you have a smooth path ahead...

Thanks for responding. That makes sense. Nobody's crazy, we're all crazy. Lol. We're looking for that crystal ball and it just isn't out there.

Hi everyone. In 2015 I was diagnosed with chromophobe  rcc in both kidneys.Has anyone else had it  in both kidneys?.I had a patial nephectomy on my right kidney( told family would be about 3 hours and actualy  was in for 8 1/2 hours)When it was confirmed chromophobe, my Dr. ask if I would be willing to have genetic testing as it was a rare type. I did have  it done and came back possitive for BHDS(Birrt Hogg Dube Syndrome) as I aslo have the lung issues associated with it.( honeycomb cyst in the lungs  and  subject to spontaneous lung collapse and cronic copd) It was then suggested that other family members also be tested.  My daughter was tsested and came back negative. My sister was tested and came back possitive, as her 2 daughters were tested and  one was possitive and the other negative. Her son was tested and was possitive.It is extreemly sad to report the he has just past away 12/31/17.We are terribly heart broken. He had  stage 4 colon cancer  that quickly spead thoughout his body. He was 37 and is survived by his 3 young children. If possible I would reccomend genetic testing as to know what to watch out for  your loved ones should they start to have any symptoms.Have scans done every three months and so far ned in right kidney.do for my next one this month.God bless you all.

repaid said:

Chromie and gentic testing

Hi everyone. In 2015 I was diagnosed with chromophobe  rcc in both kidneys.Has anyone else had it  in both kidneys?.I had a patial nephectomy on my right kidney( told family would be about 3 hours and actualy  was in for 8 1/2 hours)When it was confirmed chromophobe, my Dr. ask if I would be willing to have genetic testing as it was a rare type. I did have  it done and came back possitive for BHDS(Birrt Hogg Dube Syndrome) as I aslo have the lung issues associated with it.( honeycomb cyst in the lungs  and  subject to spontaneous lung collapse and cronic copd) It was then suggested that other family members also be tested.  My daughter was tsested and came back negative. My sister was tested and came back possitive, as her 2 daughters were tested and  one was possitive and the other negative. Her son was tested and was possitive.It is extreemly sad to report the he has just past away 12/31/17.We are terribly heart broken. He had  stage 4 colon cancer  that quickly spead thoughout his body. He was 37 and is survived by his 3 young children. If possible I would reccomend genetic testing as to know what to watch out for  your loved ones should they start to have any symptoms.Have scans done every three months and so far ned in right kidney.do for my next one this month.God bless you all.

Repaid, sorry about your loss.

I was diagnosed with 2 chromophobe rcc on left kidney in 2016 (2,5 cm and 3 cm). I had partial nephrectomy. I am NED since then. I have BHD syndrome and I got it from my mom. We got diagnose in 2005. My brother, 2 cousins, niece and 4 uncle and aunt are positive too. I have two daughters and they do not want to be tested. I had lung collapses 5 times and many partial lung collapses. I had pleurodesis on both lung side. I have some white spots on my face. I am from Slovenia (EU) and our family is the only family with BHD syndrome in our country. BHD is very rare and our doctors do not know much about BHD. I agree with you about regular scans. They are very important.

Regards from Slovenia,

Tadeja

I'll try to keep my background short, just to get to my point.  After seeking help for a kidney stone on my left kidney, I was diagnosed with a 2.9 cm kidney tumor on my right kidney in March 2013 by a Urologist with likely metastasis (due to location) and with that a diagnosis of 1-1.5 years.  I was scheduled for radical nephrectomy for three days later.  Well, MD Anderson happens to be in my hometown of Houston, so I decided to get a second opinion.  I called and was given an immediate appointment and so glad I did. In the meantime, I looked for and found a 1 year old x-ray done for my bladder when I lived in London.  I took it with me to see an MDAnderson Cancer Center Kidney Cancer Oncologist who had a different story.  Long story shortened I did have a 3.2cm tumor and 20% of my right kidney removed in April 2014.   It was Chromophobe RCC with clear margins, no metastisis.  I have my check ups with MD Anderson and am, thankfully, still cancer free.  

As a result of my experience I became part of team of Cancer Patient Advocates and I have housed about 30 different cancer patients who were coming to MD Anderson for their second opinion in my home. Needless to say, I've spent days talking to all kinds of cancer patients, each with their own story, own outcome.   This is what I have learned. . .

A)  When Doctors are receiving their degrees, someone is graduating last in that class.  Don't go to him or her.  Go to the best doctors in the graduating classes.  They will be found at (AS OF JUNE, 2018 ranking by U.S. News & Report) 1. MD ANDERSON, Houston. 2.MEMORIAL SLOAN KETTERING, NYC 3.MAYO CLINIC, Phoenix AZ, Jacksonville, FL, Rochester, MN  4.DANA-FARBER, Boston 5.SEATTLE CANCER CARE ALLIANCE 6.JOHN HOPKINS 7. CLEVELAND CLINIC.  This is your life.  TRAVEL to the Cancer Center closest to you even if ONLY to get the smart and highly recommended second opinoin on a diagnosis and line of treatment. You can always take that protocol back to your local oncologist.  This one decision can make the difference between life or death.  I've seen it and have the sad stories to tell.  

Start studying. It pays to be your own advocate.  Even though i was switched to MD Anderson for my partial nephrectomy, I still did online homework.  I found out the Dr. I had been assigned to did not use DaVinci Robotic Arm, so I was automatically scheduled for the big scissor cut half way around my body.  When I learned online that a collegue DID have experience with the Davinci Robotic procedue, a simply phone call requesting a different doctor at MD Anderson made my hospital stay go from 6 days to 2 and my healing time from 6 weeks to 2 weeks.  Instead of a scar half way around my body, I have 5 little bullet hole marks.  Keep studying.  If a doctor tells you to stay off the internet, he is the wrong doctor.  Know your disease, Know your Doctors credentials and compare them....Get answers to any question to have.  Run them all by your Dr, also.  

C). Have An Advocater.  This is especially true if you are going to be going through chemo, trials, radiation or any treatment that will incapacitate you somewhat here and there.  Have a Loved one Keep notes and a file for you, to be right there for you during this journey.  

D) Speaking of "Keeping".  Cancer patient or not, KEEP a copy of every test ever done on you.  This goes for blood work, x-rays, lab reports, ct scans, mri's.  Everything.  Because I kept a CD from a Bladder X-Ray (for Urinary Tract Infection), I went from emergency radical nephrectomy to 1 year of observation, followed by a partial nephrectomy done robotically, no metastasis.  

E) Miracles Happen!!  I've seen them with my own eyes.  Do your own thorough research for various Cancer Trials being conducted all over the U.S. in addition to studying whatever treatment protocol you are given for your diagnosis.

I think that's it for now.  Sorry for the long post.  I'm a thankful survivor who is PASSIONATE about getting the absolute best care you can get, when dealing with YOUR LIFE. 

PATTY R. 

39 years old.  Female.  CRCC in right kidney.  i have so much back pain, some days it’s a struggle to walk and sleep and sit or bend.  Ever since my biopsy, I now know I can feel the pain stemming from my right stupd cancerous kidney.  I have a radical nephrectomy scheduled Friday and it’s an open surgery.  I’m terrified of the Staging.  The mass is actually quite small compared to some I’ve read.  But the pain, the fatigue, the nausea, dizziness and did I mention short of breath all of the time... trying to stay positive in front of everyone else but my brother passed away from another rare cancer (10 months sgo) and that’s the experience I relate to.  The “what ifs” are tormenting me because I am a control freak and I suppose that’s the lesson to learn here. Patience.  You would think with 5 adopted kids, I’d have that!!!  So in the meantime it’s 5:30 AM and here I am googling the same things over and over with so few answers.  I’m also pretty pissed this was discovered months ago by a hospital in Texas and they failed to disclose they found anything.  New doc in CT read my records and jumped all over it.  Hoping that we still caught it in time. 

stub1969 said:

Welcome fellow Chromie!

Let me tell you that your post captured all of my feelings and emotions I had when I first learned of my mass.  These emotions are normal.  As difficult as it sounds, try to find peace.  

You briefly mention your tumor.  Can you give us more details such as size and where you are being treated?  Have you had you pre-op scans?  Results?  

I want to assure you that you found a great place and you can count us as part of your support system.  I'm looking forward to hearing more information about your tumor and where you being treated.  

 

Blessings--Stub

In Feb of 2018 I was admitted into a Texas hospital for pancreatitis which they said from a poor diet.  My brother passed from a rare form of pancreatic cancer, so I pushed for tests.  I had labs done every day while I was in the hospital and 1 CT of the abdomen and 1 MRI when I was first admitted.  They disclosed nothing else.  In June, I had so much back pain I could not do anything but it subsided on its own.  But I was moving so I ignored it.  In July, I was feeling the abdomen pain all the way through my flank on some levels at a pain scale of around 6 or 7.  I moved to Connecticut in June so at the end of July I found a new primary care physician and she requested my records and complete labs.  That was a Monday. By Friday her office had ordered a CT scan for Monday morning 8/6/18.  I assumed it was for my pancreas.  By the time I came home from the CT scan she was calling me from her personal cell that she was ruling out pancreatitis and was very concerned about the mass on my right kidney.

i had no clue!  She said that the hospital in Texas discovered a 2.4 cm mass on the upper pole of my right kidney.  The CT scan I had just completed measured it at 3.3 cm and my bloodwork showed a high white blood count and that I was very anemic.  She referred me to a urologist.  He is a nice guy, (not the right fit) and said it was probably a cyst and ordered an MRI.  On 8/13/18, had the MRI and found another urologist with Saint Francis Hospital in Hartford, CT.  We tried requesting CD’s and more records from the previous hospital in Texas but they are refusing to release any more medical records.

My doctor ordered a biopsy, which in my family‘s experiences is the worst thing. You poke the monster and it spreads like wildfire.  i wanted him to just take it out but he said he still wan’t positive it was cancer due to it’s irregular shape and because of the rapid growth.  He also said that if it was cancer, he had to determine what type.  On 8/24/18, I had a kidney biopsy that confirmed Chromophobe Renal Cell Carcinoma.  At my follow up, we decided to remove the entire right kidney.  Where it is located on my kidney leaves no room for a “safe zone” with a partial and its near major veins and arteries.  I’ve had prior laparoscopic surgery so we have to do a full open.  He said they cannot Stage until they get the tumor out but he is confident this it is Stage 1 because it appears to be localized.  They have found no other spots in my CT or MRI.

My plan is to have him remove it.  Stage it.  If it is beyond Stage 2, I will most likely seek further treatment in Boston and try to fight. My doctor said Stages 3 & 4 are untreatable in their experience but I have 5 kids.  Surgery is tomorrow. In the meantime, my brain is mush.  I don’t sleep much or I am so tired I cannot keep my eyes open.  The worst for me is that after the biopsy I could pinpoint my kidney and now I know that is where my pain comes from.  It’s usually a constant 3 on the pain scale and around 4 AM around a 7, sometimes 8.  I hobble around like I’m 100 and try to keep everything I eat down.  I’ve lost 36 lbs.

I know this sounds strange but I feel the worst for my mom.  She’s amazing and with the loss of my brother and cancer diagnosis for both me AND her therapy dog on the same week, it’s tough to see her so worried.  Four of my kids are under 12 and don’t really understand yet.  Ugh. We just moved, started this new chapter of our lives and this comes along. I’m sad mostly but I’m tough. So all of my world will only see tough mommy, determined daughter and the joker.   

- Sandra -

stub1969 said:

A lot going on

Goodness, Sandra, you have a lot going on right now.  Based only on the size of your tumor--you would be classified as stage 1.  There is a lot more that goes into staging of cancer, so you will have to wait for your pathology report for confirmation. 

I'm hopeful your surgery goes well and recovery is uneventful.  Take it easy during recovery and listen to your body.  It will tell you how much to push it.

Keep us updated and let us know if we can help.

Blessings--Stub 

The surgery was able to be done laparoscopically!!  I am so happy.  I’m am sleepless as usual and the nurses are wonderful.  The doc said it appears contained and he expects good news from pathology.  I imagine my pain is minimal from a full open and recovery can begin.  This early morning, I am finding hope.  Thank you very much for listening.

- Sandra -