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RCC chromophobe

Jrow
Posts: 13
Joined: Nov 2011

Hello. I was diagnosed with RCC chromophobe type, 3.5 mm, stage one, grade 2 five weeks ago after my open partial nephrectomy. It was found incidentally when I was having gallbladder issues. Had to have the gallbladder out first, wait 6 weeks to heal, then the open partial on my left kidney. Since I had so much lag time I had a lung scan, bone scan, liver & pancreas scan, mammogram which were all negative. The one week after partial nec I had a gallbladder attack and had a left-over gallstone removed via endoscopy.

I am a 56 year old female and I am just now feeling good enough to get out and about. My first bit of advice to kidney surgery patients- get that recliner. I bought one last week. Pillows under knees and to elevate head and anywhere else in bed. I had about 8 pillows. I finally took my last vicodin a few nights ago. I only took one at bedtime for the last ten. I also take a little lorazepam which helps me to relax and sleep. If anyone offers to organize meals for your family, say yes. If you can afford a house cleaner, get one. Drink lots of apple juice for regularity. Oh yeah, do other places seem to have a shortage of extra strength Tylenol? Very hard to find here. Miss my Advil but it might be what got me in this predicament in the first place.

My surgery was done at the mayo Clinic. I live in WI. I was told to come back in January for scan and tests. Was told I didn't need an oncologist because the cancer had been removed and I didn't need a nephrologist because I don't have kidney disease... What I really needed was a physical therapist to show me how to get out of bed, off the couch, etc. I still have a back ache on left side and that uncomfortable bulge above my side scar.I also get what used to feel like hot flashes when I went through menopause.

My heart goes out to all of you as I read your stories, especially the young mothers. As if you don't have a full plate already?

Let me know if anything I've said sounds familiar.

Jill R

BG
Posts: 85
Joined: Jun 2011

Hi Jill,

I also had chromophobe, 3.9 cm, stage 1 grade 2. I'm 49 and had my surgery 4 months ago. I'm in my recliner now!!

Having young ones (mine are 3 and 6) are hard on the Dads too!! I missed the piggy back rides for quite some time. I'm maling up for it now.

BG

Jrow
Posts: 13
Joined: Nov 2011

BG,

So how are you doing four months out? God bless you young dads,too!

Jill R

Kim3638
Posts: 2
Joined: Dec 2011

Hi, I am trying to understand and read all I possibly can on Chromophobe, the RCC name just given for this cancer. I did not even know there was a grading with the stage.
My 27 yr old nephew had an MRI on his spine and ends up learning he has stage 4 RCC - 16 cm tumor that knocked his kidney out of place and 8 lesions in his liver. He had no symptoms. No treatment yet-and no surgery either. Nightmare. I am trying to help my sister while she is back and forth having tests and learn here.

BG
Posts: 85
Joined: Jun 2011

Hello Kim,

There are several different sub types of RCC. Chromphobe is one of the more rare subtypes. For this subtype, the grade does not have a well established corrrelation with prognosis. I'm not sure if this is due to limited research, or just a fact. For other subtypes (clear cell, papillary, etc..) the grade can have a correlation with prognosis. Papillary is split into a type I and type II.

Chromophobe does not typically spread until the tumor is very large, not sure the size, but typically a very slow growing tumor, and can spread to the liver. There are some good resources, listserv.acor.org/archives/kidney-onc.html which you should check out. Post the information you have listed, and you can get some very good recomendations for options. I highly encourage you to do this.

I wish your family well, and my prayers are with you.

BG

jnizzi
Posts: 16
Joined: May 2010

Very familiar. I had Chromophobe RCC stage 2, grade 3. I had an open nephrectomy 18 months ago. Tomorrow I go in for my 18 month check up. This time they are doing an ultrasound rather than a CT scan and as usual an X ray. I wonder if I will ever stop worrying around this time that is has come back?

Does anyone out there have Chromophobe with recurrances? My doc said it would be very rare but I am just wondering.

Thanks!
Jenn

BG
Posts: 85
Joined: Jun 2011

Hi Jenn,

I went for my 6 month scan today, and will get results tomorrow. I looked at the images, but not sure how to decipher. I will get a tutorial tomorrow.

BG

jnizzi
Posts: 16
Joined: May 2010

Good luck with your test results! Mine turned out good....such a relief not to have to worry for another 6 months!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

jnizzi,

Congrats on the good results, NED is the best news club members ever hear.

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

Great news!

I hope your success continues!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Anyone here who has chromophobe which has gone sarcomatoid?

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