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Patient Stories

Voice of Kidney Cancer – Tom Stark

Voice of Kidney Cancer – Tom Stark

The first 60-odd years of my life were notably free of health concerns.  Some sinus issues and headaches associated with them, but nothing that caused me to be hospitalized or receive any sort of medical treatment to speak of. I had my first surgery ever in 1984 (age 36) to remove huge bunions from both feet. Otherwise, nothing to speak of. I smoked from my teens until 1984 – the surgery kept me in the house for three weeks which was enough to end that nasty habit – not one smoked since then.

I enlisted in the Air Force right out of high-school in 1965 at age 17. It was either that or be drafted and shipped directly to Vietnam. I was trained in aircraft radio repair and spent two years in North Carolina and a year in Thailand and Vietnam. During those years (the last three, anyway) on an almost daily basis I used a cleaner called TCE (trichloroethylene) which was widely used in the military for anything from cleaning bearings on machinery to cleaning electronic circuit boards before repairs were made.  It was also used as a solvent to clean gun barrels and firearms generally.  Heck, we washed our hands with it every day. In those days, things like goggles, gloves, and safety equipment were almost laughed at and were seldom made available in the workshops. On top of that, it is presumed that anyone who spent time “boots on the ground” in Vietnam was exposed to Dioxin – one of the most toxic substance to humans on planet Earth.

Fast forward to 2014 – no hazardous exposures to substances after leaving the Air Force in 1969. I complained to my doctor at the Veterans’ Administration (VA) that my lower back was painful and had been for some time. I was sent for an MRI to see what was causing the pain.  

When I got the call to receive the results, it was a total shock. No mention was made of the bulging discs in my back. What caught everyone’s attention was that I had a nearly 7 cm tumor growing in the lower half of my right kidney. Within a couple weeks I had my entire right kidney removed at University of Pittsburgh Medical Center (Mercy Hospital). It was determined that it was Clear Cell Renal Cell Carcinoma that – according to several doctors – had taken about 14 years to reach that size.  Scans showed no other cancer at that point. No other medical treatment was suggested.

I continued to have scans every six months until about January 2017 without any problems.  Then the nodules began appearing in my lungs.  One in particular was growing fast and was removed by wedge-resection in August 2017 just about three years after the initial surgery.  All was well, again, until July 2018 when two new nodules appeared.  The next scan in January 2019 showed that they had doubled in size in six months. 

An 18-month period of treatment with Votrient (pazopanib) began in late June 2019 and by January 2020 my scan was clear. Treatment continued thru November of 2020 but In June of 2020 the nodules were back. By November additional nodules and growth showed that it had stopped working.  

Opdivo appeared to be the next obvious treatment but after three infusions, a bone scan and CT showed that it, too, was ineffective in stopping the spread.  I started Cabozantinib this month at 40 mig/day with no obvious side-effects although I have apparently lost about 6-8 pounds this month (not yet an issue since I need to lose about 20 pounds anyway).

The major change has come since February when serious pains in my right thigh and hip told me something was wrong. It appears that the RCC has spread to my lower spine and a rib (it snapped two days before Christmas but was not attributed to RCC at the time).  I had my first radiation treatment last week but, so far, little relief from the pain that has me walking with a cane with little ability to lift my right leg from the hip to the knee.

I believe, and my former oncologist concurred, that my RCC was a direct result of exposure to TCE while serving in the Air Force.  Medical studies have determined that many cases of TCE exposure can take as long as 35 years to develop after exposure ends.  In my case, it was approximately 34 years in the making as my last exposure was in June 1969.  I filed a claim for service-connection but thought I would likely have to wait years for a final decision.  Some of my fellow veterans have waited a decade or more while the VA system churns ever so slowly toward resolutions. Of note is the fact that over 100,000 cases of kidney-related cancers have been diagnosed or treated at VA facilities in the past 17 yet not one significant study as to why has ever been completed.

I have found that more than anything else, this journey has been more mental than physical. The surgeries have been handled laparoscopically and recoveries have been quick.

I think my most stressful periods to date were the times between the recurring scans when all seems normal but the wondering over when/where it might show up next is the most difficult to deal with. I knew that there were likely going to be more difficult periods if the disease progressed without response to the drugs, but the waiting and wondering while having the many scenarios run through your mind keeps the stress levels high.

As much as anything else, I worry about my wife, Mary.  She certainly did not sign up for this – nor have many others in similar situations – but I know she will stick it out regardless. I am prepared in my mind for whatever course this journey takes and know where I will go when my life here is done.  I also know that I will see Mary again and that gives me comfort as well.  I just don’t want her left to deal with all that takes place in between.  

I am comforted by the advances that have been and are still being made in new treatments for RCC and pray for the researchers and doctors who devote their lives to finding better ways of fighting cancer. For now, I plod on knowing that it is all part of God’s plan. He has taught me a lot about myself and about life in general these past 13 years since I discovered the beauty of salvation and trust in Jesus to keep me safe. I fail him frequently but know he will show mercy and love in the end.

I truly encourage anyone facing the challenges of battling RCC or any other sort of cancer to know and understand that Jesus is the answer to all our problems and only He can guide you to peace in the end.

As a final note, my claim with the VA turned out to be settled in 16 months rather than years. Thanks to my first oncologist supporting my belief that TCE caused the cancer and a very thorough Physician’s Assistant that completed my Compensation and Pension examination. They both, I will always believe, were the factors that tipped the scales in my favor and produced a rating of 100% permanent and total disability. With that decision, financial security allows me to spend whatever time God grants me trying to do what I can to make the world a better place. I also, again, reiterate that the prayers of many and the mercy of a loving God produced results where nothing else could explain it. What happens next is in his hands. I am fortunate whichever way it goes.

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