I have a question

undertreatment2012
undertreatment2012 Member Posts: 126
in Ovarian Cancer #1
I read on a thread from someone who had clear cell that 80-85% of the time this sneaky type of cancer will re-appear,tumors will form and this even happens during the chemo. My Dr has already informed me that this type of cancer (which I have) is very dificult to treat and can be un-responsive. Any one else out there with clear cell? My tumor was grade 3,high potential. I am going through the chemo and I am not giving up, however, I have had a nagging feeling all along that I am not going to be alright. This person that I was reading about fought for three years of complete hell and now she is gone. Anyone know anything more about clear cell?

Comments

  • ktamp
    ktamp Member Posts: 81
    #2
    I am also a clear cell. I
    I am also a clear cell. I know it's an ugly type of ovarian cancer but I refuse to put too much into that. I know a woman from my colon cancer site that is 7 years out from her clear cell ovarian diagnosis. Same staging as me. 1C. She even chose a less aggressive treatment protocol and only did carboplatin. Nothing else. But we also both have lynch syndrome which is an inherited cancer syndrome. Supposedly our cancers are more aggressive but respond better to treatment.

    I know you're still in the trenches but sometimes you have to lay off dr google. There is so much scary stuff out there, especially with regards to ovarian cancer. It's not a great cancer to begin with but to boot there isn't the wealth of info like there is with other cancers. It's not talked about as much. You can really drive yourself nuts googling and sometimes you just have to let it go.
  • Marnel
    Marnel Member Posts: 42
    #3
    ktamp said:

    I am also a clear cell. I
    I am also a clear cell. I know it's an ugly type of ovarian cancer but I refuse to put too much into that. I know a woman from my colon cancer site that is 7 years out from her clear cell ovarian diagnosis. Same staging as me. 1C. She even chose a less aggressive treatment protocol and only did carboplatin. Nothing else. But we also both have lynch syndrome which is an inherited cancer syndrome. Supposedly our cancers are more aggressive but respond better to treatment.

    I know you're still in the trenches but sometimes you have to lay off dr google. There is so much scary stuff out there, especially with regards to ovarian cancer. It's not a great cancer to begin with but to boot there isn't the wealth of info like there is with other cancers. It's not talked about as much. You can really drive yourself nuts googling and sometimes you just have to let it go.

    Such great advice
    If I feel like I need to look up OCCC stuff on the web...I read survivor stories and I come away with so much more hope. Our docs will be keeping a very close eye on us from here on out and I like that.
  • undertreatment2012
    undertreatment2012 Member Posts: 126
    #4
    ktamp said:

    I am also a clear cell. I
    I am also a clear cell. I know it's an ugly type of ovarian cancer but I refuse to put too much into that. I know a woman from my colon cancer site that is 7 years out from her clear cell ovarian diagnosis. Same staging as me. 1C. She even chose a less aggressive treatment protocol and only did carboplatin. Nothing else. But we also both have lynch syndrome which is an inherited cancer syndrome. Supposedly our cancers are more aggressive but respond better to treatment.

    I know you're still in the trenches but sometimes you have to lay off dr google. There is so much scary stuff out there, especially with regards to ovarian cancer. It's not a great cancer to begin with but to boot there isn't the wealth of info like there is with other cancers. It's not talked about as much. You can really drive yourself nuts googling and sometimes you just have to let it go.

    clear cell
    I know so true about the internet. And I had broken myself of the urge to look everything up. But yesterday I strayed back to it. ruth is, you look stuff up but really there are no answers. So I will take your advice and back away from the Google. You said "your colon cancer site" did it go to your colon?
  • carolenk
    carolenk Member Posts: 907 Member
    #5
    undertreatment2012 said:

    clear cell
    I know so true about the internet. And I had broken myself of the urge to look everything up. But yesterday I strayed back to it. ruth is, you look stuff up but really there are no answers. So I will take your advice and back away from the Google. You said "your colon cancer site" did it go to your colon?

    There is a clear cell kidney
    There is a clear cell kidney cancer that responds to Torisel (temsirolimus). I know someone who has clear cell ovarian cancer who got on Torisel after 2 yrs. and 9 other treatments that didn't work. Last time I heard from her, she was seeing results.

    You will probably have to fight with the insurance company to pay for an off-label treatment.

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