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Global Group of Rare Kidney Cancer Specialists Meet in San Francisco

Discuss ways to speed delivery of new treatments

Due to their small population, few resources and fewer clinical trials are devoted exclusively to patients with rare kidney cancer (also call “non clear cell renal cell carcinoma” or nccRcc). To address this issue, Dr James Hsieh, a kidney cancer physician scientist, Deb Maskens, a patient advocate and Bill Paseman invited a global group of nccRcc physicians to meet on January 8, 2016 in San Francisco, to discuss the topic “How to improve outcomes for ‘rare kidney cancer’ patients around the world”.

Consulting physicians included Drs Laurence Albiges, Axel Bex, Rachel Giles, Danny Heng, Monty Pal, Lisa Pickering, Brian Shuch, Sandy Srinivas, Ram Srinivasan and Nizar Tannir.

Deb Maskens, board member of both Kidney Cancer Canada and the International Kidney Cancer Coalition (IKCC) and Dr. Rachel Giles, IKCC Board member,  provided a patient’s perspective.

The group agreed on the following Action Items.

• A “consensus paper” containing the viewpoints of the members of the January 8, 2016 discussion.  Among other things, the paper will propose Clinical trial improvements including prioritization, strict peer review, recognition by bodies of interest, making them accessible and referrable, a strong pathologic, genomic, and biological program (pathology review, tissue banking, and genomics characterization) and international alternatives for countries with no trials.  Drs. Ram Srinivasan and Axel Bex volunteered to spearhead this.
• A website listing “Centers of Excellence”, recognized experts and recommended clinical trials by subtype. Drs. Rachel Giles and James Hsieh volunteered to assist on this.
• Investigating the feasibility of a patient registry. Dr. Sandy Srinivas volunteered to investigate the possibility of using Stanford’s RedCap implementation to host this.
•  A clinical trial portal for nccRCC patients and treating physicians. Drs. Nizar Tannir and James Hsieh volunteered to assist on this.

Those interested in joining the discussion are invited to contact bill < at > rarekidneycancer < dot > org.

Operation

Summary:

My left kidney was totally removed on March 24, 2014.  In English, test results showed me to be “cancer free” with a “high risk of recurrence”. Technically, test results show I have pT3aN0M0 RCC (Renal Cell Carcinoma), papillary type, (5.6 cm), Fuhrman grade 2, with focal extra capsular extension, margins negative.

Brief Explanation:

• “Margins negative” is good. It means that the surgeon cut out the cancer he saw and he saw no cancer in the lymph nodes or artery/vein or organs surrounding the kidney.  Technically, this means I’m “cancer free”.
• “Focal extra capsular extension” is bad.  It means that by looking under a microscope, some of the cancer has spread into the kidney’s perirenal fat.  This lab classified such a cancer  as “pT3aN0”.  “T3” means that the cancer is stage 3 (1-4 stages with 4 being the worst).  According to the lab’s statistics, the 5 year survival rate for this type of stage 3 kidney cancer is 59-70%.  This means I have a “high risk of recurrence”. “N0” means “Margins negative”. “M0” means “No remote metastasis”.

Detailed Explanation:

• Kidney Cancer: Cancer is classified by the organ in which it first appears.  Since mine first appeared in the kidney, it is called kidney cancer even if it spreads (metastasizes) somewhere else.  Kidney cancer’s favorite places to spread include lungs, liver and brain.  CT and MRI Scans showed two millimeter size spots on the lungs and a (hopefully benign) brain tumor. If it is a brain tumor, hopefully it is a co-morbidity called a meningioma, not a metastasis. (Update: 20140515 MRI Brain scan and 20140605 Abdomen CT scan show no change.).
• Kidney Cancer Treatment: Most cancer is treated by cutting out the tumor and then irradiating the site (radiation) or treating with chemicals (chemotherapy).  This approach does not work with kidney cancer.  Many “clinical trials” were performed to verify that “doing nothing” worked just as well as “radiation” and “chemotherapy”.  As such, the best kidney cancer treatment approach at this point is to remove the tumor and kidney and then periodically monitor the patient to see if the cancer has spread.  If it spreads, it’s still kidney cancer and does not respond to Lung cancer or Brain cancer treatments.  Once metastasis occurs, doctors often slow down the spread using targeted therapies or immunotherapies.Unfortunately, these approaches do not cure it.
• Macroscopic examination: Once a cancer has been cut out, no doctor and no test can definitively determine if enough cancer cells were left behind to spread.  As such, they look at human visible and microscopic characteristics of the cancer once it has been removed and use statistics to predict the metastasis rate based on prior patient outcomes with similar characteristics.  Human visible characteristics include how big the tumor is and whether it has visibly spread to other areas (vein, artery, ureter, lymph nodes, adrenal gland, etc.).  In my case, it did not.  As such, the surgeon was initially quite hopeful.  
• Microscopic examination: The lab report however, was not hopeful.  Fuhrman grade looks at how long the cancer has been around by looking at cell details under a microscope.  The grades go from 1-4.  My grade is 2.  Not great, but survivable.  The kidney has an inner layer of fat.  The lab said the fat was breached and that makes it Stage 3.  Their statistics for survivability of Stage 3 are 59-70% after 5 years.  I have looked at two other studies which classify this as stage 2.  Five year survivability of stage 2 is 90%!  Unfortunately, the lab stands by its analysis.
• Clinical Trials: I am eligible for a clinical trial which would treat me with one of the molecular medicines (Everolimus) before metastasis (I go onto my process for figuring this out here).  But, quoting a hematologist I consulted, “Kidney cancer has had no successful treatment (e.g. radiation, chemotherapy, immunosuppressants).  So patients with the affliction usually just wait, hope, and live out their lives.  If you participate in the trial, you would certainly further scientific knowledge, but chances of success are low.”  A big downside is that the trial is “double blind”.  That means I have a 50% chance of getting a sugar pill instead of real medicine. As I discuss in the day 84 post, I decided not to participate since Dr. Tannir noted that Everolimus did not work on papillary RCC after metastasis in the ESPN clinical trial.
• Other: This whole adventure started when the question arose “Why does Bill still have blood clot symptoms after being on an anticoagulant (Warfarin) for two months?”.  Subsequent examination found the kidney cancer, lung spots and brain tumor.  Cancer often causes blood clots.  However several urologists have said that RCC is special and that it does not.  So another unpleasant possibility is that either I have another, undetected cancer, or that the brain or lung spots are cancerous. (Update: 20140515 MRI Brain scan shows no change. So the tumor is still diagnosed as benign. However a 20140612 ultrasound indicates that the DVT is still there). I am speaking to a hematologist to see if there might be another explanation for the clot.
• More Detail on Steve Dunn’s site.