PAYING IT FORWARD: kidney cancer patients and their loved ones sharing personal journeys and information obtained along the way, providing support to those who will unfortunately follow our paths while also honoring those who came before us.

Chain of Love: reaching forward with one hand to those who paved the path before us, reaching behind us with the other hand to those who will unfortunately follow our journey.

We Share Because We Care : Warriors Share Their Personal Kidney Cancer Journey


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Tuesday, March 1, 2011

March 2011 - John Armour

Featured and Written By:

John Armour

The Livestrong Bike Race in Austin, Texas

I have read many of your kidney cancer stories and somehow don’t feel that my story is of equal significance to most of yours, but this is my story, such as it is.

My name is John Armour , I am 58, have been married, to my wonderful wife of 35 years , with two great children, and two grandsons.
I had a pretty normal life until I went to our local hospital to have a scan done for a possible gallbladder problem. I was busy the day the scan was scheduled and almost cancelled, but decided to go. As I was leaving the radiology department, I passed the cancer center, and distinctly remember saying to myself,


“There but for the grace of God, go I”. Little did I know my life was about to be forever changed.

About three hours after the scan, my internist called me to tell me that my gallbladder was OK, but that a mass had been seen on my right kidney. I had no symptoms of RCC whatsoever. I had just two weeks earlier completed a complete physical and gotten a clean bill of health. The scan report I received indicated that an oncocytoma was possible, but kidney cancer was also a possibility. “Kidney cancer…What the hell is kidney cancer? I’ve never even heard of kidney cancer”, but apparently I had it. I couldn’t decide whether to cry or scream. I was mad at myself for getting cancer and trying to wrap my head around a cancer diagnosis was horrific, as I had lost my Mom to breast cancer when I was 18.

My wife and kids were all I thought about. I figured I was history. I immediately sought out a psychologist and began trying to sort things out. I began calling anyone I could find that could help me understand my diagnosis. I spent weeks online mining for any nugget of information regarding kidney cancer that might shed light on my diagnosis. (Actually, I was searching for something that would tell me I was going to be OK, but I never found it.) I read every abstract I could find on RCC. I found numerous nomograms that I have printed and kept, depicting recurrence rates, mortality rates etc. I found the SEER data on RCC. What the heck is SEER data? I have found and read articles on IL2, angiogenesis, VEGF, and MTOR. Before my diagnosis, I knew nothing of any of this, but I can’t say that now. I spoke with Jonny Omdurman of Imermans Angels, Jay Bitkower of ACKC and Bill Bro of KCA, and they all helped me to understand that I had a fighting chance. This was more than many people diagnosed with cancer have, and I decided that this was the foundation upon which I would build my new life.
I met with a urologist at our local hospital, and he indicated that the 5.5 cm mass was most likely a Stage I tumor. He indicated that he had some experience with RCC and that I would probably be OK. I considered staying at our local hospital for the surgery, but eventually decided to go to a cancer center, in downtown Chicago, Northwestern Memorial, to have the surgery done. My urological surgeon, Dr Norm Smith, explained that he had performed over 350 kidney cancer surgeries and that my particular case did not look difficult, since the mass was relatively small. He actually asked me to think about an open surgery as he thought he could perform a partial nephrectomy. He indicated that I would be a good candidate for a neo-adjuvant trial using Sutent. He thought it might shrink the tumor to make it easier to have a partial nephrectomy, but I decided to have a ( hand assisted) laparoscopic procedure, removing my entire right kidney. I wanted the kidney and the tumor OUT. I thought that if I had a partial that a possibility existed that some of the cancer cells would remain and therefore the whole kidney had to go. Post surgery the doctor informed me that he did not remove the adrenal, and took only one lymph node, but would not have been able to save the kidney due to the location of the tumor. The margins were clear and the lymph nodes were negative. It was at this time that he also disclosed the tumor, which had pre-surgery been staged at I, was actually a Stage III because a few cells from the tumor had been found near the mouth of the renal vein.

On April 1, 2009, I received the official diagnosis, which is Stage 3, grade 2, NOMO, 5.5 cm, clear cell.
Dr Smith offered the ASSURE trial as something I might consider. I spoke with two friends who are in the pharma industry conducting clinical trials, and watched a video from MD Anderson, with Dr Chris Woods. Dr Woods indicated that most of the adjuvant trials actually showed that those receiving the placebo arm actually fared better, than those on the tested therapy. After a lot of soul searching, I decided to sign up for the trial. I went to sign up for the trial on a Friday and was scheduled to have Muga scans , additional CST etc, all as precursors to starting the trial. I was scheduled for testing the following Wednesday. On Tuesday morning I received a call from the Oncology Department at Northwestern Memorial Hospital. They informed me that the testing had been cancelled as the ASSURE trial had been suspended and would not be re-initiated until after I had matured past the post surgical cutoff, date. Both my wife and daughter pointed out that God had pushed me to get scanned, where I received an incidental finding. They then followed up with the thought that God didn’t want me on the ASSURE trial. Coincidence? I don’t know, but I do feel that I have been put on this path for a reason.
I was scanned, CTS, chest/abdomen, at 3 months post surgery and was declared NED. I was rescanned at 9 months and NED was once again the diagnosis. About this time my oncological surgeon, Dr Smith decided to leave Northwestern Memorial and go to University of Chicago Cancer Center. Before he left, I met with him one last time to review blood tests. During this review we were going over the pages of questions that I always have, and while answering me he said ”John, I don’t think it’s coming back, I’ve seen lots of these and I don’t think it will be back”. I guess this was his parting gift to me. I pray to God that he‘s right.
While researching, I found “Anticancer” and decided to modify my diet. That day I gave up red meat, sugar, gluten, alcohol and dairy. I also read that aerobic exercise is beneficial in holding cancer at bay, so I dusted off my old racing bike and started to ride. I have always been pretty athletic. I played high school and college football in the late 60s and early 70s. I then found triathlons in the early 80s and competed in tri’s for about 8 years, so cycling was an easily accessed avenue for both physical activity and psychological focus.
Since I started my new diet and long distance riding, I have lost 40 pounds and my physical condition is pretty good for an old guy with one kidney. I was contacted by Mike Terry another RCC survivor and he introduced me to CCC, Cyclists Combating Cancer. I joined almost immediately and found that Dr Youner was also a member. I also joined Livestrong and have worn my yellow wristband since the day I got it. In August of 2010, I rode the Livestrong Challenge ride in Philadelphia, PA. I planned to ride 100 miles through the rather daunting hills around Philly. It was raining buckets, but we rode. I was riding with two of my CCC friends, both much younger than myself, but both survivors of testicular cancer. At about 60 miles into the course, we were descending a very steep hill in the rain and my brakes failed. I crashed into a ditch at about 30 MPH. I was ambulanced to the local hospital where they stitched up my face in a couple of places and did a CT of my head looking for a brain bleed. They didn’t find anything remarkable, which was great news, and I now had a baseline of my brain. I made sure to get copies of the scan along with the report, which were given to my new oncologist, Dr. Kuzel. I returned to the start/finish area where my bike had been dropped off, post crash. It was still raining, I had lost my helmet, my face looked like I had been on the losing end of a bar fight, and I was almost in tears because I couldn’t finish the ride. As I was packing my car, I was approached by a woman, a breast cancer survivor. She asked what happened and I told her my story. She took my arm and said “You’ve got to finish for yourself and the rest of us." At that point I put my cleats on and rode my bike out to the finishing chutes. I entered the chutes battered and bruised with tears in my eyes. I finished. At our team tent I found the two friends who had continued without me after my crash. They were happy I was OK, but I told them “Now I’ve GOT to ride Austin. “
I signed up for the Livestrong Challenge, Austin, the following week. In CCC, I also found a marvelous friend, a breast cancer survivor, Cindi Hart, who invited me to participate in Spokes of Hope, in Indianapolis. I went to Indy in September and we rode about 35 miles, but more importantly, we spent the day at the cancer center of the U of Indiana, meeting with other cancer patients and survivors. We discussed the fear, the anger, all the emotions that accompany cancer, in any form, with the people we met. We also carried a large banner that we asked everyone to sign. The Spokes riders would ultimately take the banner to Washington DC, where it would be given to members of Congress, after listening to us ask for more funding for cancer research. The entire Spokes of Hope ride, from Indy to Washington, was filmed. At one point, I was asked by the film crew about why I ride. I told them that I ride for those who rode before us , but are no longer with us, and those who can’t ride today. I also told them that my psychologist once told me that my bike was a better therapist than he could ever hope to be. I somehow have this crazy idea that if I ride hard enough, fast enough, the cancer won’t be able to catch me again. Sounds crazy, huh, but it helps get me through the day.
October came around and my wife and I travelled to Austin, Texas, where we met a large contingent of CCC riders. It was raining on the Saturday before the ride on Sunday, and I was very apprehensive about riding in the rain again. Fortunately, the rain stopped on Saturday and on Sunday I was ready to ride. Lance Armstrong and the whole Radio Shack team led out the ride. It was great. My CCC teammates and I started the ride knowing that some would ride short distances and others would ride 90 miles. I needed to go 90 miles for myself. I rode about 5 ½ hours, through the rolling hills around Austin, and made it to the finish area, where I was met by my wife, amongst the cheers of the crowd. She gave me a yellow rose which is given to all Livestrong finishers who are also survivors.

I had scans on December 7th, and “Thank God” once again was declared NED. The new NCCN scanning guidelines dictate that my scans will be extended to annually for my chest (CT) and every two years for my abdomen (MRI). Blood work and an office visit will remain at every six months. My next abdominal scan (MRI) is scheduled for late August with a CT for my chest in early December 2011. This is a bit scary, waiting for so long to be scanned, but Dr Kuzel is an RCC expert and I have faith in his judgment. I hope it’s not unfounded.
I am a kidney cancer mentor for Imermans Angels, and will continue to ride Livestrong Challenge rides, hopefully, for many years to come. I have already signed up to ride with my CCC brothers and sisters in Austin, in October 2011. I am seriously thinking about Philly next August. I will also plan to participate in the 2011 Indianapolis “Spokes of Hope” as well as launching a “Spokes” event in Chicago.
I thank God daily, for my family, my health, and all of you, my kidney cancer brothers and sisters, as well as all of my CCC teammates.
I wish you all healing and happiness.

John and his wife

John and his wife




1 comment:

Anonymous said...

Love you John. Same stage and grade as me at the moment.