Post op Results - Unclassified RCC

E.S
E.S Member Posts: 12
in Kidney Cancer #1
Hello All,

On Sept 28 I had a open radical nephrectomy on my right kidney. I just had a meeting with my surgeon going over the pathology results with my surgeon. The tumour was 7.5 cm and was considered to be unclassified. The surgeon still had no answer (And is still baffled as I am a 23 yr old female - an unlikely candidate) except that he said this type of unclassified tumour is an aggressive form of RCC. What worried me is that during the surgery, as a precaution took out 2 of my lymph nodes and ended up finding traces of the cancer in one of them. I thought once I had the surgery I would be in the clear, but it has dawned on me this is something I am going to have to deal with my entire life.

Because they found traces of the RCC outside of my kidney I am now extremely stressed that I am going to have to deal with this again in the future. I dont have my 3 month scans until February and I feel like a sitting duck. I was just wondering if anyone has any experience with this, or what the reoccurrence rate is for this type of RCC? Thanks for any help !

Comments

  • garym
    garym Member Posts: 1,647
    #2
    Welcome to the club...
    Hi E.S,

    Its especially sad when a new member is so young, you will find a solid group of knowledgeable and supportive people here. I don't have personal experience with unclassified tumors, mine was clear cell, but we all must deal with it in one way or another for the rest of our lives. Finding it outside of the kidney means you will have to be more vigilant than most of us with tests likely every 3 mos. instead of 6 mos. at the start and switching eventually to yearly. Hopefully added tests is all you will ever have to deal with, but you are young and strong and IF it does come back you will have early detection on your side. They are also finding new ways to fight this all of the time, a true cure for all of us could be just around the corner. In the meantime take care of yourself physically and mentally, and do everything you can to promote a healthy immune system, it is our first and best line of defense. Keep us posted.

    My best to you,

    Gary
  • foxhd
    foxhd Member Posts: 3,181 Member
    #3
    garym said:

    Welcome to the club...
    Hi E.S,

    Its especially sad when a new member is so young, you will find a solid group of knowledgeable and supportive people here. I don't have personal experience with unclassified tumors, mine was clear cell, but we all must deal with it in one way or another for the rest of our lives. Finding it outside of the kidney means you will have to be more vigilant than most of us with tests likely every 3 mos. instead of 6 mos. at the start and switching eventually to yearly. Hopefully added tests is all you will ever have to deal with, but you are young and strong and IF it does come back you will have early detection on your side. They are also finding new ways to fight this all of the time, a true cure for all of us could be just around the corner. In the meantime take care of yourself physically and mentally, and do everything you can to promote a healthy immune system, it is our first and best line of defense. Keep us posted.

    My best to you,

    Gary

    to ES
    You may be given treatment options including clinical studies. Research some of them and have some idea about them. Choose what is right for you. Not what they want you to do. I was having a pazobinib study being encouraged in the spring. It wasn't for me. I didn't want the chance of being on a placebo. I'm still waiting for verification to be accepted for MDX-1106. It would have ruined my chances if I had been on another drug. Hang tough. Ask questions. Especially here. We're pulling for each other.
  • E.S
    E.S Member Posts: 12
    #4
    foxhd said:

    to ES
    You may be given treatment options including clinical studies. Research some of them and have some idea about them. Choose what is right for you. Not what they want you to do. I was having a pazobinib study being encouraged in the spring. It wasn't for me. I didn't want the chance of being on a placebo. I'm still waiting for verification to be accepted for MDX-1106. It would have ruined my chances if I had been on another drug. Hang tough. Ask questions. Especially here. We're pulling for each other.

    I appreciate the encouraging
    I appreciate the encouraging words. I am actually booked to see an oncologist within the next couple weeks, just as a precaution. My surgeon did speak about possibly participating in a clinical trial if anything did show up in the future. Thanks for the advice…i'll keep you posted!
  • E.S
    E.S Member Posts: 12
    #5
    foxhd said:

    to ES
    You may be given treatment options including clinical studies. Research some of them and have some idea about them. Choose what is right for you. Not what they want you to do. I was having a pazobinib study being encouraged in the spring. It wasn't for me. I didn't want the chance of being on a placebo. I'm still waiting for verification to be accepted for MDX-1106. It would have ruined my chances if I had been on another drug. Hang tough. Ask questions. Especially here. We're pulling for each other.

    I appreciate the encouraging
    I appreciate the encouraging words. I am actually booked to see an oncologist within the next couple weeks, just as a precaution. My surgeon did speak about possibly participating in a clinical trial if anything did show up in the future. Thanks for the advice…i'll keep you posted!
  • E.S
    E.S Member Posts: 12
    #6
    foxhd said:

    to ES
    You may be given treatment options including clinical studies. Research some of them and have some idea about them. Choose what is right for you. Not what they want you to do. I was having a pazobinib study being encouraged in the spring. It wasn't for me. I didn't want the chance of being on a placebo. I'm still waiting for verification to be accepted for MDX-1106. It would have ruined my chances if I had been on another drug. Hang tough. Ask questions. Especially here. We're pulling for each other.

    I appreciate the encouraging
    I appreciate the encouraging words. I am actually booked to see an oncologist within the next couple weeks, just as a precaution. My surgeon did speak about possibly participating in a clinical trial if anything did show up in the future. Thanks for the advice…i'll keep you posted!
  • E.S
    E.S Member Posts: 12
    #7
    E.S said:

    I appreciate the encouraging
    I appreciate the encouraging words. I am actually booked to see an oncologist within the next couple weeks, just as a precaution. My surgeon did speak about possibly participating in a clinical trial if anything did show up in the future. Thanks for the advice…i'll keep you posted!

    Oops
    I obviously wasn't patient enough posting! Sorry for the repetitive response haha!
  • selissa
    selissa Member Posts: 4
    #8
    Hi,

    I am so sorry to hear about you having to deal with this at such a young age. My father is dealing with RCC now. I wanted to send you a quick note to encourage you to do a little research about how to stay as healthy as possible. The following videos and book have been very helpful to us. You can Google the titles to find more info. Best of luck to you in your journey. :)

    Films:
    Crazy Sexy Cancer (Crazy Sexy Diet - book)
    Forks Over Knives
    Fat, Sick and Nearly Dead
    Food Matters

    PS. If anyone has any other suggestions for films/books along these lines, please message me!

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