Introduction

I've created this blog to give my family and friends a central location to go to for the latest news on my fight against leiomyosarcoma.

First, a history so everyone is up to speed:

In the summer of 2004, I was experiencing some discomfort in my left ankle. Sometimes it would be slightly swollen and other times not, but it was frequently sensitive to touch. Pressing on it didn't create much pain, but a blanket passing over my ankle might make me gasp. I visited my physician, who thought I might have gout (an inflammation of the joints, usually with an excessive amount of uric acid in the blood) and sent me for bloodwork. My uric acid levels were on the low end of normal, so gout was out. However, neither of us followed up.

In July 2005, my ankle began bothering me almost daily. By August it was swollen constantly, so in September, I went back to see my doctor. He ordered an x-ray and told me to find a podiatrist. It was his impression that the problem was mechanical, i.e., a cartilage or ligament issue. When I first saw the podiatrist, I didn't have my x-ray films or the radiologist's report, and he diagnosed me with a possible cartilage problem between the bottom of my fibula and the bone in my foot. Once he saw the x-rays, however, he realized there was more testing to be done.

In October, I had an MRI of my fibula (see http://www.bartleby.com/107/illus258.html for an illustration of the leg bones), as the x-ray had shown a possible infection or cyst in my ankle bone (left distal fibula). The MRI showed an unidentified lesion, and the radiologist recommended a bone biopsy. The podiatrist referred me to an orthopaedic oncologist and ordered a whole body bone scan.

In November, I met with an orthopaedic oncologist at NYU Medical Center. He sent me for a CT scan of my ankle, which was inconclusive. That radiologist also recommended a bone biopsy.

On December 7, I had an open bone biopsy performed at the Hospital for Joint Diseases as an outpatient. The surgery went well, and I was sent home in a partial cast from my toes to just below my knee. On December 19, the surgeon informed us that I had leiomyosarcoma (LMS), a rare soft tissue cancer that affects 1 in 250,000 people (see www.leiomyosarcoma.info for much more information) and represents about 1% of all cancers. Since the diagnosis, I've had a CT scan of my chest, abdomen and pelvis, a whole body PET scan, a brain MRI, and an ultrasound to search for a primary tumor or metastases.

I can report with certainty that my brain, lungs, uterus, major organs, and bones (other than my fibula) are free of tumors. There are a few areas of concern in my soft tissues within my pelvis that will likely be investigated further. It seems, therefore, that I fall into an even more rare subset of those with LMS: a bone primary. Usually, the primary tumor is located somewhere in the soft tissue of the trunk (lungs, uterus, liver, etc.) and may metastasize to the bone.

On Friday, Jan. 27, Ed and I are meeting with a medical oncologist at Memorial Sloan Kettering Cancer Center in New York City. MSKCC is the largest and most well-known cancer center in the United States and its doctors come highly recommended. Our goal is not only to confirm my diagnosis, but to discuss further tests, treatment options, prognosis, etc. On Feb. 1, we will have our first appointment with Dr. John Healey, a well-known orthopaedic oncologist, to discuss the probable removal of a portion of my fibula. The removal of the tumor with clear, wide margins is the recommended treatment for this cancer. In my case, I'm lucky that tumor is within the bone and should be able to be removed completely and cleanly. (For an interesting article on Dr. Healey from New York Magazine, see http://www.newyorkmetro.com/nymetro/health/bestdoctors/2005/11959/ )

I will update this blog regularly with comments on my appointments and results of any tests. Feel free to write me here or at my usual e-mail address.