Symptoms: A Cautionary Tale of Misdiagnosis by Jim Daniel
My cancer story involves a tale of ignorance, incompetence, hope, and questions.
I was diagnosed with cancer of my left kidney in late November 1999 at age 57. I was playing soccer in October of 1999. I missed the last game of the season because of feeling unwell and pain under my rib cage on the left side.
The prior week I was out of town with my wife who was attending an art workshop. One night after dinner, I experienced sharp, spasm-like pains under my ribs. I had discomfort in this area for years, usually as a result from bending over while eating or working at a desk. This was different and I immediately thought of some type of cancer. Since I was not in the workshop, I had time to reflect and look up cancer symptoms in local libraries. I thought of liver, pancreas, etc., everything but kidney.
I had complained about the nagging pain under my ribs off and on for several years with my doctor. One time I was vocal enough to get the response, “well we can cut you open and see what’s going on,” but I was ignorant of MRI and CT techniques.
I also had two isolated urinary bleeding episodes in 1996 and 1998, the last with significant clotting. Again my doctor did not think of kidney cancer but concentrated on prostate cancer, possibly because one of my brothers had been diagnosed with the disease. My prostate checked out OK.
Looking back it appears that the doctor had been waiting for someone with blood in the urine to relate a “war story” about an army physical he had after a night of sex with his nurse.
In summary, my cancer was not detected earlier because of my ignorance, my doctor’s incompetence, and my overall good health.
My cancer had replaced about 75% of my left kidney and penetrated the renal vein. No other organs were involved but I had to also lose some muscle and rib and also had my pancreas “shaved”.
I began to have pain in my back in April, 2000. The pain was originally in the middle of my back and was very similar to muscle pain that I had in the past. Eventually there was not much pain in that area, but I began to have more severe pain in my right flank and hip area.
After P.T. treatments and visits to two orthopedic doctors, the pain became intense enough to again call on my oncologist. A bone scan was ordered and I received a message days later, “good news Mr. Daniel, You don’t have bone cancer.”
The pain increased to the point that I went to a local doctor for narcotics. When I gave this information to my oncologist a CT was ordered which showed a tumor at T12 in the bone and pressing on the spinal cord.
It appears that none of the doctors that I saw had ever heard of referred pain.
I had radiation of the area because I was told that I could be paralyzed in days if not treated. After that I had surgery September 22, 2000 to remove the tumor, the surgeon stated that, “all the tumor was removed,” and the best separation was at the spinal cord. I lost 1/4 of the vertebra, and the head of nerve T12.
I was recovering nicely until 10 weeks after surgery then began to notice some sensations in my legs. The situation has somewhat stabilized over the last five weeks but I have a lot of difficulty walking.
Both my oncologist and doctors at Duke Cancer Center state that I have no measurable disease. Although a recent MRI shows no change from one taken 12 weeks prior, there is a statement about metastatic disease measuring 18mm by 8mm. My doctor’s explanation is that it could be from surgery, radiation, or it may be cancer.
At this point I am looking at several options, including doing nothing. However, if the tumor does begin to grow in the spinal cord I could be paralyzed before another MRI is obtained or any treatment is started.
I have talked with the people at Duke about the stem cell procedure. They are encouraging me to proceed with HLA typing of my siblings.
The vaccine procedures look promising. Unfortunately the hospital was supposed to save my last tumor but someone did not get the message and it was treated in the usual manner.
My attitude at this time is fairly good. I do have some hope that the tumor will not return and am looking at some of the lower risk treatments for now. If cancer does return, then I will look at other higher risk options.
I hope this will help someone out there if for nothing else then to spread the word about kidney cancer as a possibility if any symptom persists for years without some definitive diagnosis.
Update April 2001
The thing in my spinal cord was cancer and started growing between a January 25 and March 29 MRI. Surgery is scheduled in nine days to remove the tumor. I have been given a 2/3% chance of success; explained as no further damage from surgery. I am not quite a believer in that reality, but I wish the operation was tomorrow because I am losing lower limb function daily.
The other bad news are a few nodules in my lungs. The previous little pixels that disappeared after the spine surgery were probably not cancer and disappeared only on film between the cm scans that are taken. The nodules measure about 5 and 8 cm. My doctor doesn’t think they are large, but to me they are huge. Meaning something that is in the near future, more life threating.
When I recover from surgery my plan is to agressively attack the lung problem. Some things being considered are thalidomide and IL-2 treatments. At this time I don’t know in what order. The oncologist has also mentioned gemcitabine.
The small amount of tumor to be recovered from the cord operation is to be sent to PTI of Pittsburgh, PA for cell growth with the objective for testing against several anti-cancer agents. My preference would be for vaccine therapy, but either there was not enough cancer, I couldn’t afford the company sponsered trials, or I didn’t fit the profile for NCI trials.
If anyone has suggestions of a course to pursue in treating the lung tumors after I recover from cord surgery please write me.
[Editor’s Note: Kidney cancer is an uncommon disease and one which is notoriously hard to diagnose. So unexplained symptoms in general, are not likely to be due to kidney cancer, although it’s certainly possible as in Jim’s case. In any event the moral of the story – take unexplained symptoms seriously – holds regardless.]
This CancerGuide Page By Jim Daniel. © Jim Daniel
Last Updated: April 28, 2003