Can someone please explain....how does 'Chromophobe' differ from Clear Cell, and....

HarleyMom117
HarleyMom117 Member Posts: 27 Member
in Kidney Cancer #1

Just returned from my first surgery follow-up.   I learned that my 4cm mass was chromophobe (not clear cell?), stage 1B, with a grade of 3.   It's my understanding that the grade has to do with the chance of recurrence (though the PA I saw today told me not to read too much into that).    I also know chromophobe is more rare than the other types....I think....

There is just so much info. on the internet -- I thought I would rather ask you guys (who actually know what you're talking about) than try to sort through all the information/misinformation elsewhere.

THANK YOU!!!!

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    #2
    Chromophobe

    It's a (relatively rare) type of renal cell carcinoma.  The most common type is clear cell.  There are many others.  All of these classifications are based on how these cells look after being stained and examined under a microscope:

    http://cancergenome.nih.gov/cancersselected/ChromophobeRenalCellCarcinoma

    I am chromphobe type as well. 

    Here is what "we" look like:

    http://www.pathpedia.com/education/eatlas/histopathology/kidney/renal_cell_carcinoma_chromophobe_cell_type.aspx

    The good news it that this type tends to be rather indolent - that is, it is not very aggressive nor fast growing. The bad news is that relatively little is understood about it and it does not always respond to all of the targeted and immune therapies that are currently available.  Also, since it is not clear cell, many clinical trials are not available to us.  It's not fair, but that's the way it is.

     

     

  • garym
    garym Member Posts: 1,647
    #3
    Chromophobe...

    Hi HM,

    Texas Wedge was perhaps our most well versed member on the subject, I provide the following quote from him;

    "It's known that chromophobe is not only slow-growing but also that it seldom metastasises. The downside is that it is more disposed to turn sarcomatoid than the other sub-types are. The classic form (mainly pale-cell, known as 'classic' chromophobe, as against the eosinophilic form) is associated with sarcomatoid transformation and necrosis."

    As long as your pathology report didn't mention sarcomatoid or necrosis you were very likely cured by surgery.  For more information you can type chromophobe in the search box above and it will take you to several threads.

    Hope this helps,

    Gary

  • gingersnaps
    gingersnaps Member Posts: 67 Member
    #4
    chromophobe

    My 35 yr old son also had a chromophobe 3.7  with a grade 3. I have read that the grade is not for this subtype but why then do they include it in the  path report?  He had his surgery at Cleveland clinic. He was not referred to an oncologists. Had a 3 month checkup and scans at at 6 months and at 1 year. The scans are every year from now on. I try not to worry about the grade because of what I have read. Did your urologist give you much info on the grade?

  • HarleyMom117
    HarleyMom117 Member Posts: 27 Member
    #5
    gingersnaps said:

    chromophobe

    My 35 yr old son also had a chromophobe 3.7  with a grade 3. I have read that the grade is not for this subtype but why then do they include it in the  path report?  He had his surgery at Cleveland clinic. He was not referred to an oncologists. Had a 3 month checkup and scans at at 6 months and at 1 year. The scans are every year from now on. I try not to worry about the grade because of what I have read. Did your urologist give you much info on the grade?

    THANKS, everyone --

    I truly appreciate all the info.

    I have not seen my pathology report (I have requested it...still waiting on that), but the PA I saw today for my surgery follow-up didn't mention necrosis or sarcoid.....   My next appointment is in January, and I will be seeing both my urologist (who did the surgery) and an oncologist.   The PA told me the grade (but only because I asked) -- and told me not to pay too much attention to this.

    I like that it's a non-aggressive & slow-growing form....but wish my medical team was a little more forth-coming with information.

  • gingersnaps
    gingersnaps Member Posts: 67 Member
    #6
    gingersnaps said:

    chromophobe

    My 35 yr old son also had a chromophobe 3.7  with a grade 3. I have read that the grade is not for this subtype but why then do they include it in the  path report?  He had his surgery at Cleveland clinic. He was not referred to an oncologists. Had a 3 month checkup and scans at at 6 months and at 1 year. The scans are every year from now on. I try not to worry about the grade because of what I have read. Did your urologist give you much info on the grade?

    chromophobe

     I forgot to add that the stage was t1a. He had no symptoms. He was sent for ct because of pain in his left side. The mass was in his right kidney. The mass would not have been found if not for the pain. I thank God for that scan. I have reading here since this happened. 

  • NanoSecond
    NanoSecond Member Posts: 653
    #7
    HarleyMom117 said:

    THANKS, everyone --

    I truly appreciate all the info.

    I have not seen my pathology report (I have requested it...still waiting on that), but the PA I saw today for my surgery follow-up didn't mention necrosis or sarcoid.....   My next appointment is in January, and I will be seeing both my urologist (who did the surgery) and an oncologist.   The PA told me the grade (but only because I asked) -- and told me not to pay too much attention to this.

    I like that it's a non-aggressive & slow-growing form....but wish my medical team was a little more forth-coming with information.

    Gazing into the future

    Tex's concern about the possibility of turning sarcomatoid was true - but it is a rather rare case (although, sadly, not for him) and this can still occur with all versions of mRCC.  Regardless, you will now need to be vigilant and watch for any possible metastases by undergoing regular CT scans of your abdomen/chest/pelvis. 

    I was NvED (No visible Evidence of Disease) for 2+ years after my left nephrectomy.  However, bone mets were then discovered during a routine CT scan.  The risk of this occuring varies depending on your tumor size and the overall prognosis as outlined in that biopsy pathology report that you have yet to see.

  • HarleyMom117
    HarleyMom117 Member Posts: 27 Member
    #8
    gingersnaps said:

    chromophobe

     I forgot to add that the stage was t1a. He had no symptoms. He was sent for ct because of pain in his left side. The mass was in his right kidney. The mass would not have been found if not for the pain. I thank God for that scan. I have reading here since this happened. 

    My stage was 1b....

    ....and I also had no symptoms (or risks factors).   My son noticed swelling in my right calf -- and my family doc sent me for a CT scan to rule out a blood clot.   My mass was in my left kidney.   I, too, am SO thankful my doctor took the swelling seriously enough to follow up with further testing.   BTW:  he did say the leg swelling has absolutely nothing to do with my kidney cancer.   Since my nephrectomy, the swelling in my leg has gone down about 50%.   I also had an ultrasound of my leg, and we still don't know why it swelled up to begin with!   Smile

  • gingersnaps
    gingersnaps Member Posts: 67 Member
    #9
    HarleyMom117 said:

    My stage was 1b....

    ....and I also had no symptoms (or risks factors).   My son noticed swelling in my right calf -- and my family doc sent me for a CT scan to rule out a blood clot.   My mass was in my left kidney.   I, too, am SO thankful my doctor took the swelling seriously enough to follow up with further testing.   BTW:  he did say the leg swelling has absolutely nothing to do with my kidney cancer.   Since my nephrectomy, the swelling in my leg has gone down about 50%.   I also had an ultrasound of my leg, and we still don't know why it swelled up to begin with!   Smile

    chromophobe

    Wondering if there is anyone on this forum with a recurrence with a stage t1a or t1b? (Chromophobe) my son is now having physical therapy for rotator cuff pain. 

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