Karen’s Story

Parosteal Osteosarcoma at the Distal Femur
Age at Diagnosis: 37
Year of Diagnosis: 2004
Location: Tennessee
Surgeon: Dr. Herbert Schwartz, Vanderbilt

Diagnosis: I went for a physical in September 2004. She did x-rays on my knee and chest. She saw something behind my knee. I went for an MRI. I was sent to an orthopedic doc. They did more x-rays and showed me what they found. It looked like cauliflower behind my knee. They sent me for a CT scan. The orthopedist was not sure of what this was. He told me he was sending this off to a specialist just to be safe. Dr. Schwartz wanted to see me immediately. Read more

Arnold’s Story

Parosteal osteosarcoma at the distal femur
Age at Diagnosis: 33
Date of Diagnosis: 1988
Location: Belgium
Hospital: UZ Pellenberg – Dr. Ignace Samson

Diagnosis: I was 33 years old with parosteal osteasarcoma (left distal femur) in 1988. After 4 operations (2 x donor bone and 2 x prosthesis – last operation in 2000), I am living with a prosthesis without problem. Thanks to Ignace Samson (MD in Leuven – Belgium)! For specific parosteal osteosarcoma survivors join on Facebook “Parosteal Osteosarcoma”.

Treatment: Surgery.

Life Now: Bending the left knee is only 80% possible. I’m married and still working for the Belgian Railways.

Rachel’s Story

Age at Diagnosis: 30
Date of Diagnosis: December 2005
Hospital: City of Hope
Team: Dr. Warren Chow and Dr. Vidal Trisal

Diagnosis: I had a lump in my armpit and was in pain. I was trying to get a doctor to do something about it other than say it was a blood clot. After 3 months I was seen by a general surgeon who decided to do exploratory surgery. After he saw the CAT scan from 2 months prior and compared it to the recent one, he knew it was bad! I had the surgery and a few days later found out it was a malignant tumor known as a Ewing’s sarcoma. That type of sarcoma is usually found in the couple decades of life and not usually in the soft tissue. The treatment was started about a month later. I was trying to get medi-cal and get into City of Hope. I was stuck at county hospital and didn’t feel that they knew what they were doing, since all they said was that they never seen anything like that.

Treatment: After the fist surgery, I had had to do chemo before they did another surgery to get the rest if the tumor out. I did 4-5 rounds and that took about 3-4 months. It sucks that I cannot remember the names of the chemo right? That’s a thing known as “chemo brain.” hehheee. I know it vincristin, adriamyacin and some others. I went through the chemo and then it was time for the rest of the tumor to be removed. Read more

Sharon’s Story

Chondrosarcoma at the Temporal Bone
Age at Diagnosis: 31
Year of Diagnosis: 2002
Location: United Kingdom

Diagnosis: I first saw the doctor in Jun 2001, who kept telling me I had sinus problems. After 4 months of continuous trips to the doctor with a muffled ear and dizziness I was told I had a distorted eardrum. I saw a specialist in Dec 2001 who gave me steroids. In April 2002 I had a CT scan and was diagnosed with a Glomus Jugulare Tumour. I was sent to Liverpool for a operation to find out it was a Chordoma Tumour of the Temporal Bone (prognosis of 5 years maximum). I was 31 at the time. I had Stereotactic radiotherapy for 7.5 weeks and was told by my oncologist that he thought they had misdiagnosed me. In November 2004 I finally was told that I have Chondrosarcoma of the Temporal Bone.

Treatment: I waited from April 2002 until August 2002 for surgery but it took over a year to be diagnosed and for a doctor to believe me. I had a radical mastoidectomy to remove the tumour which was on the temporal bone. When I went into hospital I had no idea it was cancer as they misdiagnosed me. After surgery the doctors kept talking about follow up treatment…thats when I realised it was serious. My 7.5 weeks treatment with sterotactic conventional radiotheraphy were probably the best time I’ve ever spent in hospital. The treatment was awful but the support and friends I made in the hospital more than made up for anything I was going through.

Recovery: After my radiotherapy I was off work for 2 months to recover. Sickness and tiredness were the worst factors. I have permanent loss of hair but was very lucky as I can hide the loss. To date I have had no recurrence. I have yearly scans and 6 monthly check ups by my surgeon but have still not talked to anyone since I got a letter with my new diagnosis of chondrosarcoma, so have no idea what my prognosis is part from it is better than Chordoma. I have constant noise in my ear now but I have been so lucky as I was told I would lose facial nerves and all my hearing in my right ear. None of this has happened so I am one of the lucky ones.

Life Now: I am back to work full time and have taken up running to raise money for cancer patients. I sadly lost my Dad to Stomach cancer whilst I was going through my radiotherapy so cancer is very close to me. I wouldn’t change a thing of what I have been through as it has changed my life for the best. The friends I have made has been unbelievable but also the sadness of hearing they have passed away is the worst.

Thoughts and Hints for New Patients: Try and be positive. Without being positive I think you just give up and admit defeat. There is a life after cancer, yes every twinge etc I think for a split second…is it back? But you can get through it. I found it harder to cope with my dear Dad suffering than going through it myself…that was a lesson learnt by me, it can be hard for those round about you.

Scott’s Story

Chondrosarcoma at the Clavicle
Age at Diagnosis: 39
Year of Diagnosis: 2004
Location: New York State

Diagnosis: In July of 2004 I noticed a knot on the side of my neck just above the collarbone. I thought nothing of it and finally got around to seeing my doctor at the end of August. She diagnosed it as a cyst and refered me to a plastic surgeon to have it removed. The surgeon was not at all convinced that it was a cyst and ordered a chest x-ray, MRI, and needle biopsy of the mass. All results came back negative for cancer and surgery was scheduled for Oct 20, 2004. The surgery was a success and the surgeon removed as much of the mass as possible and sent it off to the lab for a final biopsy. He told me that it extended below the collarbone near the lung and jugular vein, therefore he did not want to touch it unless it was malignant, in otherwords if it was nothing let sleeping dogs lie. Read more

John’s Story

Chondrosarcoma at the Proximal Humerus
Age at Diagnosis: 33
Date of Diagnosis: 1993

Diagnosis: I was experiencing left shoulder pain and weakness for a few years, so in April 1991 I went to an orthopedic doctor for evaluation. The doctor took an X-ray and stated that it was tendonitis due to weightlifting and he gave me a prescription for Naprosyn. I had been a weightlifter since my teenage years, so this seemed logical to me.

Two years later (April 1993) I was experiencing increasing pain in the same shoulder and I was unable to weight lift. I had tried numerous times over the 2 year period to weight lift, but the pain in my shoulder was so intense that it would take two weeks to go away, and my strength was down 80% in the shoulder. If I picked up anything heavy with the affected arm, the pain would become terrible and I would lose most of my shoulder mobility for a few weeks.

I then decided to go to another orthopedic doctor thinking that I had a torn rotator cuff from weightlifting. I took along my original X-rays and the doctor noticed something on them, and when he took new X-rays, the change was obvious and more of my humerus was affected by the chondrosarcoma compared to the original X-ray. Read more

Jennifer’s Story

Chondrosarcoma at the Distal Femur
Age at Diagnosis: 34
Year of Diagnosis: 2004

Diagnosis: I started having knee pain in October of 2003. I had just had my gallbladder out, and I was afraid that it was a blood clot, but since it never got worse, I waited to do anything about it. It wasn’t altering my activities and was mostly nagging me at night. I finally decided to have it looked at in April of 2004 so that I could deal with it before a busy summer. My PCP ordered an MRI of my knee, thinking it was a torn meniscus. The knee anatomy was unremarkable, but the test caught the bottom of the lesion. Just to be safe, she sent me to an orthopedic surgeon who ordered an x-ray but decided to scope my knee anyway. While waiting to have that scheduled, I got a call from him that he wanted me to have a CT, MRI and bone scan. I’m a nurse and it should have been obvious to me, but denial is a powerful thing. A week later, he called to tell me he wanted me to see his partner. How naive I was! He was kind to me, and after a few minutes told me “I’m an orthopedic oncologist, and you’re here to see me because you have cancer.” I don’t remember much of the appointment after that, although I was there for 2 hours. That was on a Tuesday and on the following Monday, I had surgery. Read more

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