Lori’s Story

In May of 2000, everything I thought I knew about my life changed.  I had just come home from a trip to New York to visit my grandparents.  It was a very normal day, and while showering I noticed a pain in my right kidney area.  Great, I thought, I’ve got a kidney infection.  I went to my GYN as he was my closest physician and the easiest place to get a urine test done.  There was no infection, as it turned out, but I did have blood in my urine for no reason.  He admitted me to run some tests.

He scanned, x-rayed, scoped…you name it, he did it.  On the very last day, he opted to run a bone scan to see if he could pinpoint the reason for my now phantom (as in gone) pain.  During the bone scan, my tumor was found.  Of course the x-ray tech couldn’t tell me that; she simply told me to get it checked as it wasn’t normal.  As a side note…no cause was ever found for the original kidney pain. …Read More

Omar’s Story

Sarcoma at the pelvis
Age at Diagnosis: 44
Date of Diagnosis: November 2004
Location: Toronto, Canada
Hospital: Mount Sanai Hospital
Team: Dr. Blackstein and Dr. Wunder

Diagnosis: I was first diagnosed in November of 2004. It was Sunday morning and I went for a10k run as I do every three days of the week. After the 6k, I felt a sharp pain in my pelvis. They did an x-ray on my pelvis and then asked me to go and see specialist. One week later I was asked to have an MRI of my pelvis.

Three weeks later, I was told I have cancer. At first I could not believe what I heard. Then I knew I had to deal with the reality at hand. …Read More

Emily’s Story

Malignant Fibrous Histiocytoma at the femur
Age at Diagnosis: 20
Date of Diagnosis: 2002
Location: Chicago
Hospital: Rush University

Diagnosis: In the summer of 2002, right before my junior year of college I began having pain while working out. However, I couldn’t remember an incident where I had injured it. My Mom is a little overprotective (which was a disguised blessing!) and she suggested I have it checked out before returning to school.

I went to my local orthopedic surgeon who took an x-ray. He said he saw a cyst in my bone and wanted to get an MRI to get a better idea of what it was. After the MRI, he was still using the word ‘cyst’ but directed me to an orthopedic oncologist to have it looked at further. At the time I still had no idea what was really going on. I figured I would see this specialist doctor, have surgery to remove this cyst, and then head off to college.

Once arriving at Rush University Medical Center, Dr. Gitelis (orthopedic oncologist) suggested I have a biopsy to see what it was. I had the biopsy and was told 3-4 days later that I had been diagnosed with MFH sarcoma, which is a Malignant Fibrous Histiocytoma. MFH is a soft tissue sarcoma but mine was found inside my femur, which I’m guessing is rare since I have not met anyone else with what I have.

I honestly did not believe that cancer was a possibility until I was told I had it. College students don’t get cancer, right? I believe the first words out of my mouth were that I didn’t want to die. I didn’t realize that people actually survive cancer.

Treatment: My treatment involved 6 rounds of chemo, surgery, and then more chemo. I started off with cisplatin, doxyrubicin, and methotrexate. After 6 rounds I had limb salvage surgery on my left leg, had 6 inches of my femur removed, and had a modular oncology prosthesis put in. My tumor necrosis rate was good but not great so my doctors decided to switch my chemo regimen to ifosfomide and etoposide.

I hated going to the hospital, but knew that is where I needed to be to get better. I loved the nurses at RUSH and they made each day there bearable. I wouldn’t have survived without them. I spent 182 days in the hospital and my Mom was with me for all 182 days. I couldn’t have done it without her either!

Recovery and Life Now: I am now almost 5 years in a disease free state. I work for the American Cancer Society and I get to help plan events and raise money for cancer education, research, and support. Since my cancer diagnosis, I have a new passion for food and love to cook and try new restaurants in Chicago. I cherish each day that I don’t have to spend in the hospital and I realize what is truly important in life.

Thoughts and Hints for Patients: When looking back at my cancer experience, if I had to do it all over again I would. It is a long hard journey that no one should have to go through, side effects you wouldn’t wish on your worst enemy, and yet at the same time you come out a better person in the end with an incredibly different outlook on life.

Terry’s Story

Fibrosarcoma at the Nose
Age at Diagnosis: 20

At 20 years old, life was smooth sailing. I was a junior at the University of California at Berkeley, a confident, athletic, successful student. Some even considered me handsome. I was living life on “easy street.”

But that year, several people began to ask if something was wrong with my nose. My right nostril appeared to be flared out. I eventually took notice of a bump pushing against my right nostril, and when it didn’t go away, I made an appointment with a doctor. After telling me it was probably a pimple, when it didn’t disappear three weeks later, he finally suggested a biopsy. …Read More