Cancer advice from parents of children diagnosed with Wilms’ Tumor.

  1. Partial nephrectomy (nephron-sparing surgery) its an option that needs to be explored, the surgeon will try to save some normal kidney tissue, if possible. The surgeon may remove the kidney containing the most tumor with a radical nephrectomy. In the other kidney, the surgeon may do a partial nephrectomy, removing just the tumor and a margin of normal kidney around it. Another option might be partial nephrectomies on both kidneys. Because Wilms tumors are rare, few doctors outside of those in children’s cancer centers have much experience in treating them.
  2. In the United States, surgery is the first treatment for most Wilms tumors. In Europe, doctors often prefer to give a short course of chemotherapy before the surgery. There seems to be no difference in the results from these 2 approaches.
  3. Top Surgeons in the field include:
    1. Peter F. Ehrlich, M.D., MSc from University of Michigan: http://surgery.med.umich.edu/pediatric/healthProviders/ehrlich.shtml
    2. For Nephron-sparing surgery Andrew M. Davidoff, MD from St. Judes Children’s Research hospital: https://www.stjude.org/directory/d/andrew-davidoff.html
    3. Daniel von Allmen MD from Cincinnati children ’s, Andrea A. Hayes-Jordan, MD from MD Anderson Cancer Center. https://www.cincinnatichildrens.org/bio/v/daniel-vonallmen
  4. Medical Oncologist Marcio H. Malogolowkin, M.D from UC David Health System: http://ucdmc.ucdavis.edu/publish/providerbio/search/21829
  5. Radiologist Thomas E. Merchant, DO, Ph.D. from St. Judes Children´s Research hospital: https://www.stjude.org/directory/m/thomas-merchant.html

 

Tips:

  • If your child is diagnosed with this condition, do not prod or push on the child’s belly area. Use care during bathing and handling to avoid injury to the tumor site.
  • Make a list of all medications. Write down questions to ask your doctor.
  • Call a healthcare provider immediately if there are symptoms of tract infection (fever, pain during urination.
  • Use non-steroidal anti-inflammatory drugs only under medical supervision. Since they can cause vasoconstriction (contraction) of the renal arteries and decrees the blood supply to the kidneys.
  • “ The internet is a great place to find this information. But you do need to be careful. If you’re not, you could fall down the rabbit hole, the following link after link and get completely overwhelmed.” http://www.searchmydiagnosis.com/research-cancer/research-wilms-tumor/