RCC chromophobe

Jrow
Jrow Member Posts: 13
in Kidney Cancer #1
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

Comments

  • BG
    BG Member Posts: 85 Member
    #2
    your subtype is familiar
    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
    Jrow Member Posts: 13
    #3
    BG said:

    your subtype is familiar
    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

    Subtype chromophobe
    BG,

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

    Jill R
  • Kim3638
    Kim3638 Member Posts: 2
    #4
    Jrow said:

    Subtype chromophobe
    BG,

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

    Jill R

    Chromophobe diagnosed
    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
    BG Member Posts: 85 Member
    #5
    Kim3638 said:

    Chromophobe diagnosed
    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.

    RCC subtypes
    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
    jnizzi Member Posts: 18
    #6
    Chromophobe RCC
    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
    BG Member Posts: 85 Member
    #7
    jnizzi said:

    Chromophobe RCC
    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

    6 month scan today
    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
    jnizzi Member Posts: 18
    #8
    BG said:

    6 month scan today
    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

    Good luck with your test
    Good luck with your test results! Mine turned out good....such a relief not to have to worry for another 6 months!
  • garym
    garym Member Posts: 1,647
    #9
    jnizzi said:

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

    NED...
    jnizzi,

    Congrats on the good results, NED is the best news club members ever hear.
  • jona187
    jona187 Member Posts: 71
    #10
    jnizzi said:

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

    Great news!
    I hope your
    Great news!

    I hope your success continues!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #11
    jona187 said:

    Great news!
    I hope your
    Great news!

    I hope your success continues!

    Chromophobe
    Anyone here who has chromophobe which has gone sarcomatoid?
  • sonnyboy66
    sonnyboy66 Member Posts: 1
    #12
    Chromophobe RCC

    As many people have mentioned my discovering of a tumor on my right kidney was found by accident while checking another minor medical issue.  Believe it or not my feet were hurting- I would eventually discover that I was walking around on two broken bones.  This led to a blood test to see if I have gout.  No gout but my hermaticrit and hemoglobin leveles were high.  The hemotologist ran a battery of tests and said that they could not determine the cause.  Then I was advised to have a sonogram of my abdomen as sometimes a tumor on one's liver, kidney or spleen can cause these counts to be elevated.  The sonogram revealed a mass 3.7 cm in size, which was not there 2.5 years ealier. 

    On 3-1-18 I underwent a partial nephrectomy at Memorial Sloan Kettering to remove the tumor, which turned out to be a Chromophobe Renal Cell Cancinoma.  This afternoon I have a follow up with my surgeon to discuss this further.  I have a series of questions for my doctor which include staging, sacromatoid issues, grade of the cells, etc. but was wondering if anyone had some questions that I should ask the doctor.  

    At my last chek up with the hematologist my hermaticrit and hemoglobin levels were normal.  Still early to tell on the blood work but I have my fingers crossed.  

    Thanks.

  • stub1969
    stub1969 Member Posts: 985 Member
    #13
    Welcome, Sonny

    Hello fellow Chromie.  Mine, too, was found incidentally.  Mine was a little over 5 cm and was coming out the bottom of my right kidney.  I'm sure you know by now that Chromophobe RCC tends to be less aggressive.  With that being said, I still would push for regular scans.  If you had clear margins, your doctor may want to have the first follow up scan in 6 months then annual scans after that.  With the size of your tumor and the varient, I wouldn't be surprised if that is the recommendation

    I think you've hit the topics of discussion that I'd ask about.  Good luck and keep us posted.

    Stub

  • gingersnaps
    gingersnaps Member Posts: 67 Member
    edited April 2018 #14
    Done with scans?

    My son just had his 6 yr. scans for Rcc Chromophobe Stage T1a . All has been well. His urologist told him we is done with follow-up. Has anyone stopped tests after 6 years?

  • Anjas
    Anjas Member Posts: 7
    #15
    Chromophobe and nivolumab

    Dear all

    My husband has kidney cancer chromophobe. He had his surgery in 2016 unfortunatly metasteses in his liver and lymphnodes. He had sutent it did not work. Now he start next week with nivolumab. Does anybody has experience with this? Thank you and God bless you

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