Rare kidney cancer

Are there any survivors out there that were diagnosed with sarcomatoid renal cell carcinoma? My husband is 43 at a stage 4 grade 4, we have 3 kids that we need to prepare for what is to come. I am unable to find any recent blogs concerning this type of cancer. I have not been able to find anything positive. My husband will start treatment around Christmas and they will give him stutinib and gemzar. The trial using these drugs are not very promising but were not done on his type of cancer. There have been NO trials or studies of meds with this type of cancer because it so rare and it spreads through the blood and not lymph nodes. We have not had a pet scan done yet but CT scan showed 8 nodules in his lungs, small tumor in left kidney, large tumor in right kidney and small tumor in right renal vien. He had an open right radical nephrectomy 4 weeks ago.

  • Hi Susan424

    Sorry for what your family are going through.

    We have information on sarcomatoid renal cell carcinoma here.

    Also we have some information here on talking to children. I don't know how old your children are but it might be helpful to you.

    Don't forget too that our nurses are only a phone call away if you would like to talk to them at any time. You can contact them on: 0808 800 4040 from Monday to Friday, 9am to 5pm.

    Best wishes

    Jane