Chris Battle
Chris Battle's Story:
“You’re cured – just kidding.”
Well, this is nearly what I was told after I was first diagnosed with kidney cancer in March of 2009. Let me tell you something: If you’re urologist swaggers in after performing what he or she know doubt considers a brilliant surgical operation to remove your kidney and tells you “I got it all, you’re cured” – then you should run. Or wait until your stitches heal, and then run.
Like many people with kidney cancer, I had no idea that this evil little growth was setting up house in one of my organs. It had been growing and expanding, crowding out my entire kidney for years. Eventually it began to push on other organs and started causing excruciating pain in my side. It was like an angry little bastard elf was squeezing the juice out of my appendix. Indeed, like my primary physician, I assumed the pain was appendicitis. At the hospital, after I had ingested a colorful array of pain meds, the emergency room physician calmly informed me: “The good news is that you do not have appendicitis. The bad news is that you have a tumor the size of my fist in your kidney.”
He held up his fist; he was a very large man.
It would turn out that the tumor was more than 11 cm in size and grade 3 on the Furman Scale - clear cell renal carcinoma. I was immediately rolled into the operation room, where they performed a radical nephrectomy.
After the surgery, when my urologist told me that I was cured, I didn’t know any better. Like so many others who have been in that same situation, I breathed a sigh of relief. In the follow-up consultation after the surgery, he told me that I had nothing to worry about, that I should come back in six months and he’d do an x-ray but to otherwise forget about cancer.
So I went home. Of course, I didn’t forget about cancer. I did what every doctor tells you not to do: I went online. And what I discovered was disturbing.
In defense of the doctors -- there are all kinds of statistics you should ignore. The sometimes grim statistics you’ll see online, often based on studies years out of date, do not account for the remarkable research advances that have occurred in the past several years resulting in a variety of new treatment options for kidney cancer. And “median” stats about survival rates are wildly inaccurate on the individual level. I know survivors who’ve been around for years and years when the “median” suggested that they should already be gone.
On the other hand, if you are careful about where you get your facts, you can learn a lot about this disease. You can learn about treatments and how to become an advocate for yourself. For example, what I learned was that my urologist had no bloody clue as to what he was talking about.
The first thing I learned is that there is no such thing as a cure. There is the hilarious acronym “NED,” which stands for “No Evidence of Disease.” (Or maybe it’s the name of my overweight uncle from Decatur, I can’t remember.)
The second thing I learned was that I had a roughly fifty-fifty chance of a recurrence.
My wife, Dena, and I set out to find a new doctor. In the meantime, we took it upon ourselves to learn as much about Renal Cell Carcinoma as we possibly could, especially the different treatment options available. This way, when we next encountered a doctor, we’d be better prepared.
The oncologist we saw agreed with us that – based on my tumor’s pathology – I should be undergoing CT scans every three months for the first year. And wouldn’t you know it, on the very first scan they found mets in the lungs.
Let’s talk about bedside manners for a moment.
When we arrived at the oncologist’s office to review the results of my scans, the oncologist himself didn’t come in. His physician’s assistant (PA) did. He asked me if I’d had a cough or any trouble breathing lately. I said no.
“Oh,” he said casually. “Well, you have tumors in your lungs.”
Dena and I were shellshocked. We just blinked at him for a moment. It was an awkward silence that the PA did little to ease. He just blinked back at us. After the silence became unbearable, I asked what he recommended as our next step.
“We need to get you set up on chemotherapy,” he said.
Dena, by this time armed with her Google degree in oncology, nearly leapt out of her chair and stabbed him in the eye with a pencil.
“No,” she said stonily. “Chemotherapy doesn’t work on kidney cancer. I want to see Dr. Smith. [Yep, names have been changed.]”
“I’m sure this is all a shock,” the PA said. “Why don’t I give you two a few minutes to digest this news.”
“I don’t need a minute,” said Dena. “I need Dr. Smith. Now. Go get him.”
I think the PA was a little scared by this point, and he should’ve been. He left the room, and after a while Dr. Smith entered.
He informed us that I had two significant mets (metastasized tumors), one in each lung, along with a shotgunned collection of smaller mets spread about both lungs. It was, he said, inoperable. (It would turn out that he was wrong.)
Dr. Smith was better prepared than his assistant. (Maybe he’d been warned about the crazy couple in Room 3.) However, he wasn’t as prepared as we would have hoped an oncologist would be. He wanted to start me on Sutent immediately. We knew from our own research that this was not the right course of treatment.
We had come to learn that there is only one treatment at this time that can provide a “complete response” – meaning eliminating all of the cancer in my body. This treatment is known as High Dose Interleukin 2, or IL-2 by shorthand. We also knew that taking Sutent would undermine our ability to undergo IL-2. We were thus a little nonplussed by our doctor.
Thank god for Dena. I was still of the mindset where I would have simply said, “Okay, you’re the doctor. You know best.” Dena isn’t quite so passive.
“What about HDIL,” she asked.
Another one of those blinking awkward moments of silence.
“High dose interleukin,” she said.
“Oh, right,” Dr. Smith said. “I thought you said HTIL.” Another pause. I could feel Dena’s eyes burning a hole in his skull. “Well, that is very hard on the body, very hard. And it has a very low percentage of success.”
Our confidence level in our latest doctor began to sag. Low percentage of success or not, we knew that I was a perfect candidate for the treatment. Not everybody is a candidate. It is indeed a difficult treatment that can result in severe side effects, including death if not administered properly, but as a relatively young (42) man in good shape and no health problems (uh, besides cancer), I may as well have been listed in some IL-2 textbook as “ideal candidate.” And we wanted to do it. Our desire was not to “extend life” but to eliminate cancer. I wanted NED, man – whether NED is a funky acronym or a fat man with healing powers, I wanted NED.
And so we found ourselves on the hunt for another doctor. Again. This time, we would seek out a renal cancer specialist. We found just the man we were looking for in the form of Dr. Dan George of the Duke Comprehensive Cancer Center. He was not only familiar with IL-2 but was a researcher on the cutting edge of new potential treatments for kidney cancer. Equally important, he had a fantastic bedside manner and exuded optimism. He immediately agreed that I was an ideal candidate for IL-2 and that we should go for it. Sutent would always be there waiting for us if it didn’t work.
I have now gone through three rounds of IL-2 and, as predicted, it has not been an enjoyable experience. Three “rounds” are actually comprised of two one-week treatments – so a week in the hospital, under intensive care conditions, then two weeks for the body to recover, then another week back in the hospital followed by two weeks of recovery. I have written extensively about experiences with IL-2 on my blog, which you can find at http://www.caringbridge.org/visit/chrisbattle.
Despite having absorbed more than 50 doses of this toxic concoction into my body, I have not achieved a “complete response” – and the holy grail of NED. However, I have had a partial response that has eliminated the smaller mets in my lungs, and this has opened the possibility of lung surgery to remove the two larger mets. After we review the next round of scans, we will make a decision on whether to undergo surgery. It will be a challenging process, as it will require two separate surgeries – opening up one side of the chest to resect the tumor from one lung, then doing the same thing for the other side. Asked why we couldn’t do it all at once, my oncologist said, “Hey, you gotta breathe, right?” Good point.
We’ve come a long way since the day more than a year ago when my urological surgeon told me that I was cured. Had we listened to him, it is possible that we would not have caught the metastasis until it was too late. Had we listened to our first oncologist, Dr. Smith, it is possible that we would have gone on Sutent immediately and not had any results while the same time eliminating IL-2 as a treatment option.
Today, it is possible that, after the IL-2, and if surgery is successful, I will reach my goal – No Evidence of Disease.
It has been a difficult – at times painful, at times confusing and at other times scary – two years. However, if NED comes knocking on my door, it will have been worth it. I plan to let that crazy bastard in, and I am hopeful he will stay a long, long time.
Chris Battle
Alexandria, Virginia
Chris is no longer with us here on earth. He won his battle against kidney cancer by the way he lived his life. He will always be a strong voice within the kidney cancer community. He will live on in the hearts of those who knew and loved him!
Dena and Josie
Kate and Josie
Chris, Dena and Kate
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