need someone to talkk to

fiala
fiala Member Posts: 8
edited March 2014 in Kidney Cancer #1
I have so many questions to others that have gone through the kidney cancer ordeal. I have gone back and read other inquires but still need someone to chat with. Any takers?

Comments

  • abestbarbara
    abestbarbara Member Posts: 18
    I had a nephrectomy in 6/04. I now have metastasized to the lung. I go Tues. for results of last CT scan. The Chat room here is very helpful. Somebody usually comes around in the evening. Take care
  • fiala
    fiala Member Posts: 8

    I had a nephrectomy in 6/04. I now have metastasized to the lung. I go Tues. for results of last CT scan. The Chat room here is very helpful. Somebody usually comes around in the evening. Take care

    thanks for getting back to me. Good luck with your appt. I am just very confused about not having any chemo or radation, What about you?
  • abestbarbara
    abestbarbara Member Posts: 18
    fiala said:

    thanks for getting back to me. Good luck with your appt. I am just very confused about not having any chemo or radation, What about you?

    Mine was papillary so there is nothing else they can do but surgery. Chemo or rads don't work on this. Although now that I have mets to lung, I am wondering about IL2. Asking at next app. on Tues. Take care
  • fiala
    fiala Member Posts: 8

    Mine was papillary so there is nothing else they can do but surgery. Chemo or rads don't work on this. Although now that I have mets to lung, I am wondering about IL2. Asking at next app. on Tues. Take care

    Did you have scans done before surgery?
  • abestbarbara
    abestbarbara Member Posts: 18
    fiala said:

    Did you have scans done before surgery?

    I had a CT scan after accident and now I have one every 3 months
  • fiala
    fiala Member Posts: 8

    I had a CT scan after accident and now I have one every 3 months

    Does every 3 months seem to be the norm for the scans? My Doc was talking about every 6 months for 3 years.
  • urkabsd
    urkabsd Member Posts: 37
    fiala said:

    Does every 3 months seem to be the norm for the scans? My Doc was talking about every 6 months for 3 years.

    i had my left kidney, one rib and lymph nodes removed last feb. i have had 2 cat scans and a bone scan since then and they give me blood work every 45 days that is pretty extensive. i still have some pain in my side but it is bearable. i am back at work but it took a while. my cancer was stage 2 renal cell because of the size but it has not, thank God!,spread anywhere else. i am 59 years old and i am doing very well. i was surprised about chemo and radiation too but it is not reccommended for renal cell cancer. hope this helps
    kathie
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    i had my right kidney removed in sept 2004. ihave mri and cat scan every six monthes and cystoscope every three monthes. so far there are no cancer cells in other parts of my body but i have developed benign tumors in my bladder .i have received mytomicin treatments and now i am considering bcg treatments.seems to me that this will continue to be a ongoing battle. hope and pray that things get better
  • faithful1
    faithful1 Member Posts: 8

    i had my right kidney removed in sept 2004. ihave mri and cat scan every six monthes and cystoscope every three monthes. so far there are no cancer cells in other parts of my body but i have developed benign tumors in my bladder .i have received mytomicin treatments and now i am considering bcg treatments.seems to me that this will continue to be a ongoing battle. hope and pray that things get better

    I had my nephrectomy in the last week of Aug. 2004.
    I am still scared to death every single day! Is this a normal reaction? I was and am still concerned that there are few survivors. I have heard many horror stories. Not many cases in the area I'm from. I get costly scans every 3 months and after another 2 of them I will go to every 6 months if all is well.
  • lbinmsp
    lbinmsp Member Posts: 266
    I had a left radical nephrectomy in 2001 and had scans/tests initially every 3 months. After the first year he finally switched me to every six months. For you, the first thing I'd recommend is research everything on the internet. That's what I did (and continue to do so). Also, write your questions down and take them to your doctor. My surgeon was amazingly (and refreshingly) honest and forthright with me.