I'm just a little confused

ThomasR
ThomasR Member Posts: 4
in Kidney Cancer #1

 

On Nov 1, I had my first ever hematuria event. A ct scan 2 days later revealed a mass on my right kidney and several involved lymph nodes in my medistinal and collar bone area. On Dec 1 2014 I had a full radical nephrectomy and a 7 cm tumor along with my right kidney were removed. Multiple local lymph nodes were also removed and 3 of 9 were metastatic.

 

Pathology confirmed Chromophobe Carcinoma.

 

Now, fast forward to this month where both a thoracic surgeon and an oncologist at Seattle Cancer Care Alliance have said that chasing the lymph node mets (one is 4 cm) is not beneficial. They are starting me on Afinitor to treat  this.

 

Am I getting screwed here? It seems that EVERYONE's case I've read about here has follow up surgery to address the mets when they are battling metastatic chRCC.

I am seriously uncomfortable about whats going on with these guys. This is my life they're toying with.

 

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    More than 1 way to skin a cat

    Thomas,

    There is no 1 size fits all when it comes to cases like yours. I have no opinion one way or the other because it is above my paygrade.

     

    What I think would be appropriate is to seek out a second opinion and see if another specialist concurs or has additional thoughts.

     

    Enjoy the off season and the liquiid sunshine which you have this time of the year. My brother lives in Issaquah and I visited this time last year.

     

    May whatever course you choose bring a full recovery.

     

    Icemantoo

  • Dutch1
    Dutch1 Member Posts: 152
    #3
    OK, my situation is fairly

    OK, my situation is fairly similar to yours.  My original tumor was somewhat larger than yours and had gone into my adrenal gland.  19 lymph nodes in the area of the kidney/tumor were taken out at time of surgery and 14 of these were found to be cancerous.  That was in February of 2013.  I was in a trial involving a new applicatioin of Everolimus from April 2013 to April 2014.  I was all clear on scans during that period.  Now, in October 2014, four lymph nodes were found to be cancerous in my upper chest area.  They have been caught early.  I am on Sutent (that's Afinator, I believe) now.  We asked about surgery and surgery wasn't thought to be a smart play at this time.  The position of the lymph nodes was a problem and some of the cancerous nodes were caught so early that it would be tough to identify them in surgery.  My take on it is that a broader attack on the entire lymph node system is a better strategy vs. cutting out the known lymph nodes.  I am OK with that, as I feel that my lymph node system is suspect right now and I'd rather attack that system in its entirity rather than a couple of infected nodes ... only to have the cancer show up in some other lymph nodes.  That's my crude view of the situation.  I don't think that your recommended response to the new cancer locations is too weird.  Of course, second opinions are always good.  I had a second opinion as to how we respond to my cancer recurence and both oncologists had the same recommended course of action:  Sutent.

    Best wishes.

    Dutch1

     

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #4
    Dutch1 said:

    OK, my situation is fairly

    OK, my situation is fairly similar to yours.  My original tumor was somewhat larger than yours and had gone into my adrenal gland.  19 lymph nodes in the area of the kidney/tumor were taken out at time of surgery and 14 of these were found to be cancerous.  That was in February of 2013.  I was in a trial involving a new applicatioin of Everolimus from April 2013 to April 2014.  I was all clear on scans during that period.  Now, in October 2014, four lymph nodes were found to be cancerous in my upper chest area.  They have been caught early.  I am on Sutent (that's Afinator, I believe) now.  We asked about surgery and surgery wasn't thought to be a smart play at this time.  The position of the lymph nodes was a problem and some of the cancerous nodes were caught so early that it would be tough to identify them in surgery.  My take on it is that a broader attack on the entire lymph node system is a better strategy vs. cutting out the known lymph nodes.  I am OK with that, as I feel that my lymph node system is suspect right now and I'd rather attack that system in its entirity rather than a couple of infected nodes ... only to have the cancer show up in some other lymph nodes.  That's my crude view of the situation.  I don't think that your recommended response to the new cancer locations is too weird.  Of course, second opinions are always good.  I had a second opinion as to how we respond to my cancer recurence and both oncologists had the same recommended course of action:  Sutent.

    Best wishes.

    Dutch1

     

    Thomas

    I agree with Iceman about getting a second opinion...although Dutch's view on his situationmakes a lot of sense too. But a second opinion wouldn't hurt.

    Wishing you all the best.

    Hugs

    Jojo

  • NanoSecond
    NanoSecond Member Posts: 653
    #5
    Dutch1 said:

    OK, my situation is fairly

    OK, my situation is fairly similar to yours.  My original tumor was somewhat larger than yours and had gone into my adrenal gland.  19 lymph nodes in the area of the kidney/tumor were taken out at time of surgery and 14 of these were found to be cancerous.  That was in February of 2013.  I was in a trial involving a new applicatioin of Everolimus from April 2013 to April 2014.  I was all clear on scans during that period.  Now, in October 2014, four lymph nodes were found to be cancerous in my upper chest area.  They have been caught early.  I am on Sutent (that's Afinator, I believe) now.  We asked about surgery and surgery wasn't thought to be a smart play at this time.  The position of the lymph nodes was a problem and some of the cancerous nodes were caught so early that it would be tough to identify them in surgery.  My take on it is that a broader attack on the entire lymph node system is a better strategy vs. cutting out the known lymph nodes.  I am OK with that, as I feel that my lymph node system is suspect right now and I'd rather attack that system in its entirity rather than a couple of infected nodes ... only to have the cancer show up in some other lymph nodes.  That's my crude view of the situation.  I don't think that your recommended response to the new cancer locations is too weird.  Of course, second opinions are always good.  I had a second opinion as to how we respond to my cancer recurence and both oncologists had the same recommended course of action:  Sutent.

    Best wishes.

    Dutch1

     

    Clarification

    Dutch.  Sutent and Afinitor are two different drugs.  Sutent is a TKI (Tyronise Kinase Inhibitor) and Afinitor is an m-TOR inhibitor.  Both of these drugs interfere with the tumors ability to build new and private blood vessels that are essential for their growth and proliferation but they do it by targeting totally different pathways.

    Sutent is considered first line treatement for cancer recurrence and Afinitor second or third line.

    Best wishes,

    -Neil (NanoSecond)

  • Dutch1
    Dutch1 Member Posts: 152
    #6
    My mix up

    I thought that I had Afinitor in my history and that seems to be correct.  The clinical trial that I was in involved Everolimus ... which is also known as Afinitor.  So, I had been on Afinitor.  But, now, I am on Sutent.  And, yes, Sutent is not Afinitor.  I got that mixed up.  At least, I know I am not crazy.  Just forgetful.  I'm trying to find a way to blame the forgetfulness on my cancer drugs.  Not sure I can pull that off.

     

    Dutch1

     

     

     

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