Clinical Trial - Needed?

unroxy
unroxy Member Posts: 7
edited March 2014 in Kidney Cancer #1
I was diagnosed with renal cell carcinom/papillary type (7cm tumor on left kidney/ grade 1). I had a radical nephrectomy 5 weeks ago. My Dr. said chem/radiation wasn't necessary; I went for a 2nd opinion (just seemed so strange that chemo/radiation not needed) - the 2nd Dr. said chemo/radiation not necessary, but he wanted me to participate in a clinical trial which might prevent reoccurence. One of the possible side effects was kidney failure, so I'm inclined to say no (okay, so I'm more than just inclined to say no). I have to make a decision right away (have to start it within 12 weeks of kidney removal).

The tumor was comletely encapsulated; what would you do?

Comments

  • nonnatoo
    nonnatoo Member Posts: 34
    #2
    Hi, I had a left partial nephrectomy in October '07, renal clear cell carcinoma. My doctor said no further treatment was necessary, other than a 6 month MRI and if that is clear, another a year later. If I were you, I think I's check with the surgeon who treated you and ask his opinion. I don't think I would have any treatment that might result in any threat to my remaining kidney. Good luck. I hope this helps. RoseAnn
  • anniec
    anniec Member Posts: 18
    #3
    Hi unroxy, boy that's a hard decision, I like you, had a 7cm encapsulated tumor. The dr.s say 85% chance of cancer not returning with a stage 1 grade 1.You need to research other trials, fast. Do you believe in the hospital, and doctor's opinion, and reputation. Why did you have a radical? best wishes anne
  • unroxy
    unroxy Member Posts: 7
    #4
    anniec said:

    Hi unroxy, boy that's a hard decision, I like you, had a 7cm encapsulated tumor. The dr.s say 85% chance of cancer not returning with a stage 1 grade 1.You need to research other trials, fast. Do you believe in the hospital, and doctor's opinion, and reputation. Why did you have a radical? best wishes anne

    Hi anniec. I had a radical 'cause that's what the dr. recommended and I was so nervous, I didn't question it. I don't think I'm going to do the clinical (too many bad side affects). The doctor who wanted me to do the clinical trial was my "2nd opinion" doctor; he kinda made me nervous 'cause he said the pathology report from my 1st docotor was wrong, that I should have been Stage II because my tumor was 7cm and even though it didn't penetrate the membrane around the kidney, it "infiltrated" it. I just don't know who to believe.....I don't know if he was telling me that to scare me to do the clinical trial or what.

    Are you doing any other treatment?
  • anniec
    anniec Member Posts: 18
    #5
    unroxy said:

    Hi anniec. I had a radical 'cause that's what the dr. recommended and I was so nervous, I didn't question it. I don't think I'm going to do the clinical (too many bad side affects). The doctor who wanted me to do the clinical trial was my "2nd opinion" doctor; he kinda made me nervous 'cause he said the pathology report from my 1st docotor was wrong, that I should have been Stage II because my tumor was 7cm and even though it didn't penetrate the membrane around the kidney, it "infiltrated" it. I just don't know who to believe.....I don't know if he was telling me that to scare me to do the clinical trial or what.

    Are you doing any other treatment?

    Hi unroxy, no treatment was advised. I went to memorial sloan kettering so I feel I got the best surgeon oncologist.But what do we know, we can only believe what the specialists tell us. It sounds like you might need a third opinion. are you feeling like me, every pain I feel I think I have cancer, I guess I need some more time under my belt! 11 weeks since my surgery.
  • unroxy
    unroxy Member Posts: 7
    #6
    anniec said:

    Hi unroxy, no treatment was advised. I went to memorial sloan kettering so I feel I got the best surgeon oncologist.But what do we know, we can only believe what the specialists tell us. It sounds like you might need a third opinion. are you feeling like me, every pain I feel I think I have cancer, I guess I need some more time under my belt! 11 weeks since my surgery.

    Hi anniec, It's been 8 weeks since my surgery and yes, every pain I think it's back. A week after my surgery, my right side started hurting. I was told that it was "transfer pain". It kept hurting so last week, I finally went to my nephrologist(?) - my right kidney is okay, just have gall stones (gee, why couldn't they fix that when I had the 1st surgery :0).

    It's weird, but I was glad they found the gall stones; I thought I was going nuts!

    I do think I got one of the best surgeons; I'd like to think he was the best oncologist too.
  • tbado
    tbado Member Posts: 11
    #7
    Here is just a little that I have learned. Mine was stage4 with mets on L&R lungs( rt nephrectomy) I have done many trials (left one still good but I always worry). Try one more oncologist opinion. I have had a friend with your situation and only monitoring reccommended.

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