Stage 4 Chromophobe RCC

Searching_answers
Searching_answers Member Posts: 2
in Kidney Cancer #1

My Dad was recently diagnosed with stage 4 chromophobe rcc that has spread to all of his lymph nodes, lungs athe other areas near the kidney. The dr is not telling us much about what to expect. we have been told surgery is not an option because he would need to go 6 weeks after surgery before being able to do any kind of treatment and thaget he cancer in other areas would be given that time to spread/grow. We are really looking for honest answers so that we can make informed decisions and prepare for what we are looking at. Anyone have any similar experience? I can not seem to find any stories where surgery was not an option for treatment with this type of cancer. Tired of being given the run around about prognosis. Ready for some truths. 

Comments

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #2
    we were told the same thing

    Your dad should see a renal oncologist and make sure that all his questions get answered by the doctor.  It's terrible that things are not being explained adequately.  My husband was diagnosed as Stage 4 RCC clear cell with mets to bone 2 1/2 years ago.  It was recommended that he start targeted therapy and not have his kidney removed first.  It was the consensus of the tumor board/oncology group that it was better to find a targeted therapy that would stop the growth of the mets and hopefully shrink them, before time was taken to remove the kidney.  His kidney was removed after one year of therapy on drugs.  When this approach was presented, I came on this website and did not find anyone else with the same plan, initially.  It seemed like everyone was having their kidney and tumor removed right away.  That is the standard of care, however; with Stage 4 there are other considerations to be made.  Another reason that a person may not be offered surgery is because of their health, or age, or other risks.  I think most of the factors are subject to change, given time.  You are not alone with this treatment option.  It is true that a person needs to heal from their surgery before they can begin targeted therapy.  At least that is what we were told.  My husband waited 2 months after the nephrectomy before he started back up on the medications.  I don't know what other people have experienced as a wait time.  I recommend that you see an expert in RCC, and get a second opinion, and definitely have a doctor that answers your questions.  Best wishes to you and your father.

    add-  We never asked about prognosis.  It just wasn't something that we wanted to know or have spelled out to us.  We knew this was serious....but we didn't want to hear anyone's guessing.  And the thing is, with statistics, you never know which person you are in that group.  I think it's up to your Dad whether he wants to know a doctor's best guess at what the future holds. 

  • Searching_answers
    Searching_answers Member Posts: 2
    #3
    a_oaklee said:

    we were told the same thing

    Your dad should see a renal oncologist and make sure that all his questions get answered by the doctor.  It's terrible that things are not being explained adequately.  My husband was diagnosed as Stage 4 RCC clear cell with mets to bone 2 1/2 years ago.  It was recommended that he start targeted therapy and not have his kidney removed first.  It was the consensus of the tumor board/oncology group that it was better to find a targeted therapy that would stop the growth of the mets and hopefully shrink them, before time was taken to remove the kidney.  His kidney was removed after one year of therapy on drugs.  When this approach was presented, I came on this website and did not find anyone else with the same plan, initially.  It seemed like everyone was having their kidney and tumor removed right away.  That is the standard of care, however; with Stage 4 there are other considerations to be made.  Another reason that a person may not be offered surgery is because of their health, or age, or other risks.  I think most of the factors are subject to change, given time.  You are not alone with this treatment option.  It is true that a person needs to heal from their surgery before they can begin targeted therapy.  At least that is what we were told.  My husband waited 2 months after the nephrectomy before he started back up on the medications.  I don't know what other people have experienced as a wait time.  I recommend that you see an expert in RCC, and get a second opinion, and definitely have a doctor that answers your questions.  Best wishes to you and your father.

    add-  We never asked about prognosis.  It just wasn't something that we wanted to know or have spelled out to us.  We knew this was serious....but we didn't want to hear anyone's guessing.  And the thing is, with statistics, you never know which person you are in that group.  I think it's up to your Dad whether he wants to know a doctor's best guess at what the future holds. 

    Thank you for the respose. I

    Thank you for the respose. I am glad to hear someone else that had success without initial surgery. Dad is wanting the answers as well just to be able to get some kind of idea for what we are looking at. 

  • todd121
    todd121 Member Posts: 1,448 Member
    #4
    Complicated Case

    Many of us (maybe most) here had a single tumor in one kidney, and that was why our kidney was removed. They have had pretty good success with that strategy and it is the standard of care for that case.

    Stage 4 can be much more complicated to treat. Multiple tumors with some inoperable, it's not so clear what's the best approach. With a complicated case,  you really should have as experienced a team as possible looking at the situation. A medical oncologist with RCC experience is your best choice (the more RCC experience the better). You can find these guys at major cancer hospitals/centers and at universities or large teaching hospitals. If that's not possible, then finding a medical oncologist with some RCC experience or willing to consult heavily with one of the RCC specialists is the next best choice. There's been a lot of progress with new drugs in the past few years and there are a lot of clinical trials. Chromophobe is a rarer type of RCC (clear cell RCC is rare enough, but chromophobe is even rarer).

    Make sure you have a medical oncologist you trust. If you need help finding someone, ask on here.

    It's pretty common with Stage 4 and multiple mets to go on treatment first instead of doing surgery. At least we've seen it posted here a few times that that was suggested.

    You might want to look into clinical trials. Your medical oncologist can help you look or you can search yourself online. If you're interested and your medical oncologist is against it, get another opinion. I got 3 opinions before I decided on my treatment last year. The first opinion I'm pretty sure was wrong. All were good, but the first opinion I got was from a medical oncologist with no RCC experience. I ended up getting 2 more opinions from RCC experts and got better information. The RCC experts definitely knew more than the non-RCC expert. They were just way better prepared because they follow all the papers/research closely (in fact were both involved in the research).

    Wishing you the best,

    Todd

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