Sally’s Story

Osteosarcoma at the distal femur
Age at Diagnosis: 27
Date of Diagnosis: 2005
Location: United Kingdom
Hospital: Royal Orthopaedic Hospital in Birmingham

Diagnosis: I first started with knee pain in October 2004, but my GP put it down to a strain even though I couldn’t remember falling or injuring myself. The pain got gradually worse, and I was waking in the night feeling as though my leg was on fire. My knee was hot, red and swollen. I kept going back to my GP but he kept giving me painkillers and telling me to come back in two weeks. Eventually I insisted on being referred to a specialist and had an X-ray at the hospital in February 2005. The X-ray showed “something suspicious” and I was referred to the Royal Orthopaedic Hospital in Birmingham for a biopsy, chest CT and bone scan. I was finally diagnosed with osteosarcoma in March 2005. Read more

Ronette’s Story

Ewing’s sarcoma at the radius
Age at Diagnosis: 26
Date of Diagnosis: 2007
Location: Indiana
Hospital: Indiana University Medical Center
Team: Dr. Daniel Rushing, Dr. L. Daniel Wurtz

Diagnosis: I first saw an orthopedist in October 2003 after bumping my arm on a door frame. I noticed the next day there was some swelling and a lot of pain. After an x-ray, there was some sort of tumor in my distal radius (right above the wrist on the right arm) and was scheduled for a biopsy. That biopsy came back as necrotic marrow, negative for malignancy. Little did I know that three years later the biopsy was not done correctly and they only scratched the surface.

Well, in the summer of 2007, my arm looked like someone had slid an egg under my skin, and trying to squeeze things became almost impossible. After seeing the doctor I work for, he ordered an x-ray and it looked like someone had taken a bite out of bone. Part of the bone was more than half gone. After gathering my medical records and sending them to an orthopedist in South Bend, it was determined that I needed to see an orthopedic oncologist at IU Med Center. He saw me, told me that he suspected it was cancer, but hoping for a slow one since it had been there for three years. Read more

Aaron’s Story

Chondrosarcoma at the proximal femur
Age at Diagnosis: 20
Date of Diagnosis: 1990
Location: Idaho

Diagnosis: I was 19 years old when I was playing soccer. I was running down the field and I heard a snap and then sharp pain coming from my second toe on my right foot. My toe just broke!

I went to a doctor who did an x-ray and said that something was wrong with my bone, it was as thin as an egg shell. He sent me to a specialist who had me go through a bone scan. There they found a sizable tumor in my right proximal femur.

Treatment: I went to surgery in September of 1990 where they removed the bone in my toe and replaced it with a cadaver bone. They curretaged my femur and sent me on to PT. My diagnosis was Encondroma. A benign cartilaginous tumor. Read more

Brian’s Story

Osteosarcoma the Distal Femur
Date of Diagnosis: February 1993
Age at Diagnosis: 25
Location: Massachusetts

Diagnosis: I was 25 years old and working as a police officer in the city of Boston. While making an arrest, I struck my right knee on the ground. I felt a sharp pain shoot up my leg. I was surprised how much it hurt, because I didn’t hit it that hard. I finished the day and went home. I returned at midnight for overtime and my knee seemed fine until I felt more sharp pain while stepping down a small wall and by morning I noticed it was swollen. Best thing I probably did in my life was to write an injury report that day, but naturally I continued to work a double shift. The following day I went to the emergency room. No x-rays were taken and I was told I had a deep bruise and it would be better in a few days. Read more

Madeleine’s Story

Low-grade Osteosarcoma at the Distal Femur
Age at Diagnosis: 27
Year of Diagnosis: 1991
Location: Massachusetts, USA

Diagnosis: I thought I had twisted my knee when the car moved a little bit when I was getting out. I was feeling some loss of motion. I went to see my primary care doc, who said it was probably just a sprain and to return if it didn’t get better in a couple of weeks. My knee really only bothered me when I tried to squat down, so I didn’t get it checked out until 6 months later. My doc sent me to an orthopedic who took an X-ray. He came back with a medical book and his interpretation: “I’m not qualified to make this diagnosis, but your x-ray looks exactly like this” – pointing at a picture of a starburst tumor. He called immediately to Massachusetts General Hospital and I had an appointment within the week. Surgery was scheduled for the following week, and I spent the weekend between away with my best friend in Vermont, just hiking and having fun. I remember thinking, I don’t feel sick and my leg doesn’t look like anything is wrong with it. I just tried to stay calm and enjoy the beautiful spring weather. Prior to surgery, I had a CT scan and bone scan and MRI – I’ve never had such a battery of diagnostic testing since. 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.

Laura’s Story

Ewing’s Sarcoma at the Scapula
Age at Diagnosis: 21
Year of Diagnosis: 1983

Diagnosis: Almost 1 year before diagnosis, I had pain in my left sholder (scapula). Eventually went to an orthopedic specialist who said it was bursitis. Had 2 cortizone shots. Didn’t go away. I was in my first trimester of pregnancy. Doctors continued to say bursitis. Seven weeks from due date, I went to family doctor asking if there was anyting else I could take for pain besides Tylenol. Well, to make a long story short, I had x-rays and biopsy locally. Doctors said it was cancer but didn’t know what kind. They sent me to Mayo Clinic. (Pregnancy complicated things!). On 2/14/83, I was diagnosed with Ewings sarcoma (I was 21 years old). On 2/16/83 my son was born at Rochester Methodist Hospital in Minnesota. He was induced; 4 lbs. 1 oz. Healthy, just needed some fat on him. On 2/17/83, I had scans and bone marrow biopsy. On 2/18/83 I started my first chemo treatment. On 2/21/83, we headed home! This is a short version of a long story! Read more

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