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Chromophobe RCC case

grnsammy09's picture
grnsammy09
Posts: 20
Joined: Sep 2013

Hello everyone!

I am 2 years post op from complete neprectomy. I had a very large 22cm Chromophobe RCC tumor removed, stage 2, no mets. I am just wondering if anyone with ChRCC ever experienced mets anywhere else after surgery? I am wondering if there are favorite places of ChRCC to reappear as opposed to others. I am extremely paranoid with every ache and pain I have that the cancer has returned. I have been having severe back pain in the area of my middle spine and am getting an xray done in a few weeks. My doc also wants to do a bone scan. Any input would be greatly appreciated...Thanks guys!

 

-Tracy

I am alive
Posts: 315
Joined: Jul 2012

Hi,

i had an 11 cm tumor removed in 2004. First met appeared four years later, between the vena cava and aorta. Surgery removed it. About three years after that, in 2011, a met appeared on the L1 vertebrae. It was radiated and contained, but a couple of others popped up several months later - 2 in lymph nodes in the groin area, and one in the mediastinal area. So I began a clinical trial which lasted 22 months. Have enjoyed relative stability with no drug therapy for over a year. But then a met grew in the humeral head of my shoulder, which we just removed with surgery and radiation. Got a few small mets in the liver now and will meet with my onc next week to plan the next move.

So that's my story. I feel good and live a very normal life. RCC is sneaky and don't listen to doctors who say you don't need to be followed Closely. Find an oncologist who specializes in RCC. Chromophobe is a rare variety of it and a lot of docs don't know much about it. BecauseI have been metastatic since '08, I get a CT of the abdomen, chest & pelvis every 3-4 months. That's common for stage 4. Before mets, I had an MRI every 6 months for three years post nephrectomy . In year four the MRI was pushed out to once a year and that was when my met was discovered. You need to be especially vigilant because your tumor was so large. Was it fully encapsulated? 

Chromophobe likes bones and liver, I am told. try not to freak out. These early days are the hardest. You are trying to process the diagnosis, everything you read is scary, you think you are going to die any day now. The blessing of chromophobe is that the luckiest among us never get metastasis. I pray that is you! But if you do get a met, chromophobe tends to be indolent. It's been 11 years since my diagnosis. Stay in the light and be positive. Surround yourself with people who give you joy. And don't forget to have fun.

I am alive
Posts: 315
Joined: Jul 2012

Tracy,

i just realized I didn't address your number one concern - your excruciating pain in the spinal area. It's good your doc is ordering a bone scan. I get bone scans once a year, whether I'm having bone pain or not.  over the years I've had weird back pains that have cone and gone. I had no pain with the L1 vertebrae met, but several months after radiating it had a painful compression fracture of it cause radiation had weakened the area. Sometimes we hold our body a certain way, not realizing it, and develop aches and pains. I don't carry anything even the slightest bit heavy anymore. Why don't you push to have the bone scan sooner rather than later so you can cut down your worry time. Please let us know what happens. And good luck.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

My onc sent me to an endochronologist to check out my thyroid and hormones. Apparently I have a number of collapsed vertebrae due to osteoperosis.

grnsammy09's picture
grnsammy09
Posts: 20
Joined: Sep 2013

Footstomper, that sounds very innteresting. I will bring that up. I have arthritis everywhere which is odd because im only 31. Endocronologist sounds like a good idea. Thank you for responding.

grnsammy09's picture
grnsammy09
Posts: 20
Joined: Sep 2013

Thank you so much for your reponse. It sounds like you've been put through the ringer as well but I am so happy to hear you're doing better now. I am definitely going to request to have the bone scan as soon as possible. The pain in my spine almost feels like the spine itself is bruised and its from the middle of my spine to the bottom of my neck area. Very localized. Will keep posted. Thanks again!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I've had tremendous pain in my spine and pelvis due to mets. Radiation has eliminated all pain. That and a pretty good response to my drugs keeps me going. The zometa to strengthen my bones has been very effective. Worrying makes no difference. Face it. Deal with it. Look forward to feeling better. Glad things are being followed up.

grnsammy09's picture
grnsammy09
Posts: 20
Joined: Sep 2013

Thanks Fox....Appreciate it! :)

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