CancerGuide: Inspirational Patient Stories
Ken and his wife Evie cruising the San Juan Islands in September 2003
The Fourth of July is normally a time for a Great Celebration. In my case, it was a time for a Grand Opening of the abdominal cavity.
On July 4, 1999, my day was spent with four surgeons who were explorers, risk takers (my nickel) and experts in their field.
Today I am a 76 year old male and twelve year survivor of Stage IV Renal Cell Carcinoma (RCC is the most common type of kidney cancer). Stage IV is the metastasized stage of the disease with a very low survival rate. At least that is what I was told after the pathology reports were received five days after surgery. The surgeons removed a kidney, the associated adrenal gland, a wedge of liver, a mass on the colon, six lymph nodes and a cancerous wrapping around the vena cava (the major vein returning blood to the heart). The Urology Oncologists came in to give the prognosis after surgery and they may well have had black capes and a scythe. The prognosis for survival was not good.
In June 1999, I had not been feeling well. Although I played racquetball two or three times a week, I seemed to be getting weaker. I had regular annual physicals and prior to June 1999 had no complaints or history of cancer. Since January that year I had been trying to lose weight and it was coming off very nicely. I had no appetite to speak of and by June, I had lost 30 pounds (from 205). I was having night sweats and some repeated dizziness. On one occasion I passed a considerable amount of blood through stool in the middle of the night. At the Emergency Room, I was diagnosed with hemorrhoids and was told arrangements would be made for a colonoscopy the following day or two.
Although the diagnosis of hemorrhoids would not account for the night sweats, fatigue and dizziness, I went along with the Emergency Room diagnosis. It took persistence and assertiveness on my part to get my regular Internal Medicine physician to intervene and have a colonoscopy scheduled in mid July, 1999.
Somewhere in the month of June 1999, I had a business meeting in Washington DC and flew there from southern California for a week. At the meeting I was constantly chilled and felt lousy. Upon returning home I had a low grade fever and dizziness. I chalked it up to a cold acquired on the airplane.
We had plans to view the renowned July 4th parade in Coronado, California, and had taken our motor home to Coronado a few days before so we could enjoy the parade and fireworks with our grandchildren.
On July 3, my dizziness increased to the point I could not stand up without feeling I was going to pass out. That afternoon, I asked my wife to take me to the Emergency Room at our hospital. On triage, I had a pulse of 160 and blood levels of about half of what they should be. I was admitted to the ER promptly. I was again diagnosed with bleeding hemorrhoids and a colonoscopy was scheduled for the next morning, July 4, 1999.
On the morning of July 4, the colonoscopy revealed a bleeding break in the upper colon and surgery preparations were made. Upon opening the abdomen, the surgeons found the reason for the bleeding: a tumor was invading the colon. However, they also found cancer involving the kidney, the adrenal gland, the liver, lymph nodes (6) and the vena cava. My wife was given the option of closing me up without the major surgery and treating me nicely for whatever time I might have had left, or going for a very risky surgery which I might not survive. She chose wisely and as I would have -- to go for the surgery. Not knowing specifically what type of cancer they were dealing with, in a nine hour operation, the surgeons removed all the identifiable cancerous organs and tissue and used ultrasound to rule out hidden tumors in the liver.
It should be noted here that one of the surgeons volunteered the information recently that had my tumor load been discovered by a CT scan, or other means, prior to my presentation with a bleeding colon on the Fourth of July, 1999, they would have most likely declared my situation "inoperable." The surgeons estimated that, based on tumor size, the cancer had been progressing over a period of about five years before the surgery. The "good news" was that they saved enough of the colon so I do not have to wear "the bag." The "bad news" was I had Metastatic Kidney Cancer stage IVb -- the most advanced stage.
Now the quest for survival began. A post surgery CT scan showed several suspect areas in the lung and renal bed. A PET (Positron Emission Tomography) scan provided evidence that cancer still existed at the renal bed (the area in the abdomen where the kidney was attached). All this time I was attempting to get into a clinical study which would allow me to receive High Dose Interlukin-2 (IL-2). Although FDA approved, the hospital in San Diego was not prepared/equipped to administer High Dose IL-2 and the oncologist referred me to UCLA's Doctor Robert Figlin for evaluation for a clinical trial. From my reading, IL-2 offered about a 15 percent chance of providing some response to the kidney cancer but also presenting significant side effects. The clinical trial at UCLA was for those who had surgery for the RCC and were cancer free because "we got it all." In the course of this evaluation, Dr. Figlin ordered a bone scan, brain MRI, PET scan and finally a needle biopsy validated kidney cancer at the renal bed. I flunked getting into that trial because I had residual cancer at the renal bed as proven by the needle biopsy. I flunked another clinical trial for Leuvectin because the trial director determined that the residual cancer was too small to inject and the location too risky to inject the Leuvectin.
Then it was decision time. What to do? Chemotherapy doesn't normally work on kidney cancer. Radiation is only a palliative treatment. There are other trials which were in early stages of development but with no proven track record. I could have requested low dose IL-2 at my treatment facility or found a place that would administer High Dose in the San Diego area as IL-2 was approved for Kidney Cancer by the FDA.
Among other discouraging options, the oncologist suggested one option could be to do nothing. NOTHING? That was not in my play book, but after a second CT scan showed "no change" in the disease, I was intrigued by that option. So for the first year I did nothing but fret between scans -- no treatment, no nothing -- and every three months the CT scan showed the same "no change", and on July 4, 2000, we had a gala One Year Survival Party. I continued the fret-scan-whew routine for three and one half years with "no change" being the official read of the scans. "No change" didn't really tell me what happened to the tumors that were discovered early on by the need biopsy, so I requested another PET scan. That scan showed no cancer at the renal bed or elsewhere. I was declared to be in clinical remission from Stage IVb RCC after three years. I have had two annual scans since that time and each indicated no cancer in the lungs, abdomen or pelvis regions with No Evidence of Disease (NED). The tumors either shrunk below the threshold of recognition or disappeared entirely.
During the first year and to the present I became familiar with many cancer websites. The most helpful site for all forms of cancer is Steve Dunn's CancerGuide. Steve is a long term kidney cancer survivor who provides a great service to all cancer patients and care-givers by providing insights into the disease and resource connections. Another great resource is the KIDNEY-ONC E-Mail List which has over 1000 kidney cancer survivors, caregivers and patients who interact on a daily basis about kidney cancer issues. The Kidney Cancer Association is another very useful resource for printed information, recommendations for kidney cancer experts and special information meetings.
Some of the obvious aspects of cancer survivorship are: take one day at a time; smell more roses; talk to more friends; and enjoy the time allotted, whatever that may be.
I felt and remain extremely grateful to be among the one half of one percent (or one in 200) Stage IV Kidney cancer survivors who achieve voluntary remission. This has been attributed (in no particular order) to successful surgery, prayers, positive attitude and Johnny Walker Blue Label (a story in itself!).
Obviously from my earlier statements in this story, surgery was the first line of defense and should be considered even in "inoperable" cases.
In extended survival of a preliminary diagnosis of fatal disease, there is the "Damocles" syndrome: The sword hanging over the head, not knowing when it will fall. I had that. Another is the syndrome experienced by the lone survivor of a tragic accident in which hundreds of people are killed. The survivor asks, "Why me?" There is guilt for having survived. I had that.
My oncologist's ready response to "How long do I have" was "how long does HE have?" He says he might be hit by a truck while stepping off a curb tomorrow. I tell him that I usually look both ways before stepping off the curb. My oncologist is a hematology/oncology specialist and is not among the "recognized" small cadre of national kidney cancer experts. He was always, however, willing to go the extra mile when the need may arise in the future for referrals, second opinions and aggressive treatment. I have had so many CT scans with contrast that the Oncologist and Radiologist ordered the last scan without contrast, trying to protect my remaining kidney while experiencing greater longevity.
Recommendations for Survival
Study the disease, research the options, know more than your doctor does about your disease (or at least THINK you do). Be proactive. Be positive. Don't take NO for an answer when it relates to treatment. Get a second opinion. Get a third opinion or as many as it takes.
Staying active with work and family has given me many reasons for survival and provides welcome diversions from the realities of being diagnosed with kidney cancer.
Five days before my 1999 July 4th "coming out party" I signed an agreement with the Navy to Chair a private organization to build a Memorial on Navy property to remember the 2,564 Navy and Coast Guardsmen who died in the Vietnam War. The project has occupied a tremendous amount of my time and will finally be dedicated in May 2005. Information on that project can be viewed at www.vummf.org.
I am currently a 14 year survivor of stage IV RCC with mets to the pancreas head, body and tail. Have undergone cyberknife on the met on the head of the pancreas and watch all three with MRI every three months.
If you'd like to write, please E-Mail me at firstname.lastname@example.org.
Note: An earlier verion of this article appeared in volume VII, issue 3, 2003 of Family Urology Magazine as one of a series of articles on cancer survivors.
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Page Created: August 22, 2004, Last Updated: 2013