Jim Gurney (rollersk8ter)
I started smoking cigarettes at the age of 14. By age 18, I was smoking 2 packs a day. After high school, I worked a few years at an electronic company where I worked daily with an electronic cleaning chemical called trichloroethylene. Very little safety precautions were used back then, no gloves, no respirator, no goggles. I worked 4 years in the US Navy as a fire control technician. I worked on the ship’s computer anti-air guided missiles, specifically working on radar guidance and computer systems. In 1983 during a “leave” home my 1st born son, James Jeremy was conceived. I left the Navy in the summer of 1983 and had numerous jobs for a few years - installing roofing, siding and then working with a framer building houses, even did bartending for a period. I finally got my dream job, working for a large computer company first in manufacturing, as a computer operator, then finally working in computer security. When my daughter, Courtney, was born, I wanted to quite smoking to show my children that adults don’t need to smoke to be adults. I quit before she turned a year old. I haven’t wanted to return to that habit since. My daughter, 19, has never smoked cigarettes to my knowledge. My son, 26, smokes like I used to smoke. I smoked for about 18-20 years before quitting.
Around 2003 or so, I started really concentrating on getting in shape, health wise. I would walk 1 ¼ miles at least 5 days a week, other days I would roller-skate up to 3 hours. I switched over to only eat whole wheat foods, no bleached/bromated/enriched bread, no white pasta, no white rice, no white potatoes; I stayed away from high sugar foods and deserts. I was down to 220 lbs (I am 6’ 1”) and feeling great. I had an annual physical every year, including blood tests, chest x-rays, etc. One Sunday in October 2007, I was shocked and scared to see cranberry colored urine coming out of my body. I saw my general physician (GP) on that following Monday; he told me it could be an infection, kidney stones or cancer. After Urine tests showed so much blood that they could not test for an infection, they ordered a CT-scan which found a tumor in my left kidney. I was referred to a Urology surgeon.
In Nov 20007, I had a laparoscopic radical nephrectomy (left kidney and adrenal gland removal). Pathology report was a 5.5 cm clear cell, T1b, Fuhrman grade 3, Renal Cell Cancer (rcc). Once removed, the Urologist told me it appeared to be contained to the kidney (“got it all”); follow up was chest x-ray every 3 months for 1st yr, every 4 months for 2nd then every 6 months for the remainder of 5 yrs. He stated to me that I had a 10% chance to have cancer again some time in my life, less than 5% to have it return to my remaining kidney. Neither the Urologist nor GP ever mentioned seeing an oncologist.
March 2009, during my routine 4th x-ray, they found an isolated 2.5 cm tumor in my left lung, bottom back, near what used to be the kidney bed. CT-Scans, and bone scans were ordered by my Urologist and I was then referred to a lung surgeon. Lung Surgeon wanted to ensure it was rcc and not lung cancer, stating it would be a different operation (wedge resection for rcc vs removal of node for lung cancer) depending on what it was. Metastatic Renal Cell Cancer (mrcc) was confirmed by biopsy.
After removal of the lung tumor (wedge resection), I really started thinking I should be seeing a cancer doctor (oncologist). I asked the Surgeon his thoughts of me seeing an oncologist. He referred me to a general oncologist, whom I have always liked. She ordered PET Scan and a brain MRI. At that time I was also complaining of occasional clamming/sweating and lightheaded events. All tests showed no visible evidence of disease (NVED). The Oncologist told my wife and me, my life would be shorter than we had previously thought; she was concerned on the quickness (16 months) of the renal cell cancer metastasizing. She presented my case to a group of oncologists (a tumor council she called it) and they all agreed 100%, I should go on the targeted chemotherapy drug called Sutent. She told me my white blood count (wbc) and red blood count (rbc) was low and she would recommend 25mg 4 wks on, 2 wks off. The schedule has changed over the months but not the dose, currently (1st quarter 2010) I am on 25 mg 2 wks on, 1 wk off.
So here I am 9 months later still on Sutent and my oncologist wanted to know my thoughts on going off Sutent and going into ”observation mode”. My initial feelings were “What are you crazy?” Sutent has been keeping me NVED. She stated she wasn’t stating I had to stop Sutent, but just wanted to see how I felt about it. This has been racking my brain since she mentioned it 3 wks ago. I went back to one video found on the Kidney Cancer Association website from Feb. 2009, where Dr Wood from Anderson Cancer Center talks about adjuvant therapy (treatment to prevent reoccurrence.) He stated “Effective adjuvant therapy for RCC doesn’t exist in the year 2009” and “Drugs that have shown efficacy in the metastatic setting time and time and time and time again have shown no benefit in the adjuvant setting”.
At this time, I don’t know which fork in the road I am going to take. I know it’s one of those questions to which there is no definite answer. Did the Sutent keep a bunch of non-visible micro cancer cells in my lung from enlarging this past 9 months or maybe kill them off? If I stop the Sutent, will metastatic rcc cells create blood vessels and quickly start growing? Are there similar cancer cells somewhere else in my body and the Sutent has been keeping them at bay? If I stay on Sutent, will it damage my heart or other parts of my body? Long term use/damage from Sutent can’t be known, it has only been FDA approved since Jan. 2006. My quality of life has been affected with Sutent side effects. It has affected my blood pressure and I have been taking 2 bp medicines daily. It has also caused reflux for which I take anti-acid medicine daily. I suffer with diarrhea, acid reflux, insomnia, anxiety, “sore feet and back” which keep me from walking and standing for long periods. I am leaning towards going into “observation mode”, but only if I can get a doctor and insurance company to agree to upper/lower/pelvic scan every 3 or 4 months for at least the 1st 12 months.
I am going to Duke Medical Hospital 3/12/2010 to do exactly what I have recommended to new rcc patients and caregivers for the last 9 months. I am going to see an oncologist that specializes in urological cancers to get their opinion. Something I should have done almost a year ago, if not over 2 yrs ago. Both times, I was in so much of a hurry to have this cancer surgically removed from my body. From all the expert opinions I have seen and read, maybe I should have gotten 2nd and 3rd opinions on both occurrences. Originally, maybe I should have seen if partial nephrectomy was a possibility, so I would still have a 2nd kidney and adrenal gland. Maybe I should have tried Sutent before I had the lung surgery to see if it would shrink the tumor and show that it works in my body. So many “what if’s”, but I have to promise myself there is no more looking back……just live life to it’s fullest, let everyone close to me know how much I love them, make a decision and live with whatever happens. I now have a 2 yr old granddaughter and I want to be here on earth for many more years.
Written By: Jim Gurney(rollrsk8ter)
Thank you Jim for sharing your story! I know it will help someone in the future! You were so kind to be the first KCW featured!
