This site is meant for patients who receive a rare Kidney Cancer diagnosis and physicians who give them.

This site's information is vetted by practicing physician scientists who work in the field of rare kidney cancers.

It attempts to avoid "Cancer politics" by not asking for donations, having no sponsors, no corporate affiliations, and by being run completely by volunteers.

It attempts to directly answer questions that patients with a rare kidney cancer often ask when given a diagnosis.

• What caused my Cancer?
  • Cancer occurs when the genetic code of a particular cell becomes mutated and its growth becomes uncontrolled.  If the mutation was passed down from one or both of your parents, it is called a germline mutation.  If the mutation was caused by environmental factors, it is called a somatic mutation.  More detail is gven in the resource "Molecular Genetics for the Practicing Physician".
• What is the standard treatment for my condition?
  • Surgery is the SOC (standard of care) for stages T1-T3.  At T4 (metastasis) there is no standard treatment.  Since nothing is guarnteed to work, all T4 treatments are experimental, involving clinical trials.  More information is in the post "Determining the appropriate Kidney Cancer Treatment".
• What do T1, T2, T3 and T4 mean?
  • T1, T2, and T3 mean the Tumor is localized.  T4 means that the tumor has metastasized (spread).  The American Cancer Society gives more detail here.
• If my disease has metastasized, is it terminal (will I die from it)?
  • Each case is different.  Some patients die from the disease.  But even for those patients, terminal does not mean immediate.  Every case is different, but often life can be prolonged for years or even decades via surgery, radiation or experimental drugs and treatments. And sometimes, if the metastasized disease is stable and does not threaten any bodily function, no treatment is necessary at all,
• "No Treament" is an option?  That doesn't sound right.  All cancer needs to be treated, right?
  • No. Consider prostate cancer.  Just about every male over 70 has prostate cancer.  However in most cases, it progresses so slowly that it does not need to be treated.
• Do Rare Kidney Cancers have a cure?
  • None has been found yet, although treatements are being researched; many by physician scientists listed on this site.  
• Does Regular Kidney Cancer have a cure?
  • In the case of Clear Cell Kidney Cancer,  the most dominant form of the disease, approximately 10% of patients treated with IL-2 (Interleukin 2) had a "complete response", which means that all signs of the disease had disappeared.  However IL-2 does not affect Rare Kidney Cancers ( Upton 2003 reviewed response of the various sub-types of RCC to IL-2 based therapy. There were 14 patients with type II papillary RCC and 2 with type I. Unfortunately, none responded.)  What's more, IL-2 is not as commonly prescribed nowadays since it is poorly tolerated.
• What does "Poorly Tolerated" mean?
  • It means that the side effects of the treatment can do maore damage to the body than the disease.
• Suppose I am T4.  Can you explain "Surgery and radiation" treatments in more detail?
  • Surgery and Radiation are usually used when the cancer interferes with some bodily function.  For example, Surgery may be prescribed for cancer that has migrated to the spine, and a Cyberknife (targeted radiation) is sometimes used to reduce the size of tumors that metastasize to brain.
• If the cancer spreads to anther organ, like the Brain, isn't that really Brain Cancer?
  • No.  Metastasis occurs when a particular organ's cells mutate (become cancerous) and spread.  If the mutated cells originate in the kidney, it is kidney cancer, no matter where it spreads.  This is important because kidney cancer in the brain responds to kidney cancer treaments, not brain cancer treatments.
• Can you explain "Experimental drugs and experimental treatments" in more detail?
  • Like the lives of AIDS patients in the 1980's, your life can be prolonged via the use of experimental drugs.  Physician Scientists conduct Phase 1, 2 or 3 clinical trials (experiments) using experimental drugs either singly or in combination.  There are other treatments besides drugs however.  These generally involve engineering T-cells or visruses to target you tumor.
• What is the difference between Phase 1, 2 and 3?
  • Phase I trials are run to see what drug dosage can be tolerated by a patient.  Phase II trials determine if the drug improves thr condition.  Phase III trials determine how well the drug does compared to another treatment.
• Which clinical trial is currently the best?
  • No one knows.  If a particular course of treatment showed unambiguous evidence that it was best, it would become a "Standard of Care".  We are not there yet.  As such, there are many clinical trials (experiments) going on simultaneously to determine what is "best".  More information is in the post "Clinical Trials".
• Which trials show the most promise?
  • As of early 2016, Immunotherapy drugs in combination (E.g. Avastin + Tarceva for papillary kidney cancer) show the most promising "Progression free survival".  This site gives informed medical advice about various cancer treatments.
• What is "Progression free survival"
  • This is the number of months that your tumor shrinks or stays the same size after administration of a treatment.  Once the tumor(s) start growing again, patients ofter move to another clinical trial.
• How can I find and apply for clinical trials?
  •   More information is in the post "Clinical Trials".