Ewing’s sarcoma at the clavicle
Age at Diagnosis: 30
Date of Diagnosis: November 20, 2006
Hospital: University of Mississippi Medical Center
Team: Dr. Darryl Hamilton and Dr. Scott E. Porter
Diagnosis: I had intermittent pain in my left clavicle beginning in July of 2003. Every three or so months, it would hurt for approximately two weeks. Aleve would always control the pain and it was never unbearable. In March of 2006, my 18-month-old son threw his head back and banged it into my clavicle. It was the most horrendous pain I ever had. Two weeks later, it felt back to normal, but there was a knot on my clavicle. A friend of mine, who is a nurse, looked at it and said it looked as if it had been fractured to her. So my best friend, who is an x-ray technician, took some x-rays. She thought it appeared “funny” – there were black spots all the way down my clavicle. It started a testing frenzy. I was scanned through every machine imaginable, blood & DNA tests were done, lastly a biopsy. It confirmed I did not have cancer, just fibrous tissue.
In July, the regular pain flared up again, and I wanted a true diagnosis. With all of my tests in hand, I was finally sent to an orthopedic oncologist who told me I was the most extensively tested case of either Paget’s Disease or Fibrous Dysplasia he had ever seen. No cause for alarm… Just wait and see over the next year.
My first follow up appointment was November 2, 2006. The knot on my clavicle had really grown… but I just thought it was the bone “bowing” out due to the bone disease I had. My x-ray showed that wasn’t the case. There was a tumor there that was not on my x-rays from July. Dr. Porter kept giving me stats – only 1%of cancer is primary bone cancer. Only 1% of primary bone cancer originates in the clavicle. But, because of that tiny percentage, I would still want to check it out.
MRI was scheduled for November 3rd, which in turn led to my biopsy on November 14th. I was told on November 20th that I had cancer and on the 24th the Mayo clinic confirmed the diagnosis of Ewing’s Sarcoma.
That was a horrible Thanksgiving! I found out just before the holiday that I had cancer, but had to wait until after the holiday to get the confirmation on the diagnosis. I was so frightened – I knew that sarcomas were extremely aggressive and I had a child who had just turned 2. We had been ready to celebrate Christmas and then begin trying for another child. The previous 2 years had been a roller coaster anyway – we had had a baby, I had been diagnosed with multiple sclerosis and then had the cancer scare earlier in the year. If it were not for the grace of God, my family and close friends, I don’t know how I would have survived it.
Treatment: My treatment began very quickly. A port was placed on Nov 30th and chemo was set to begin December 3rd. During all of this, one of the path reports showed the bone had a mycobacterium avium infection – it is normally in people with tuberculosis of the bone infections. The health department tried to step in and stop my chemo so that they could treat the TB. I refused treatment until I could get my oncologist involved. He’s a very brusque man – and I was so glad it wasn’t me on the other end of the phone when he called the Department of Health. I actually received a phone apology from the nurse at the Department of Health who had jumped the gun.
My treatment proceeded very uneventfully after that. I had six outpatient treatments (VAC, Adriamycin was taken out and substituted w/ Dactinomycin after four treatments). Those were rotated with six week-long inpatient treatments consisting of Ifos and Etop. The outpatient treatments were harder physically, while the inpatient treatments were harder mentally. I chose to have my entire clavicle removed because of the pre-existing bone disease. My pathology report showed a 100% kill rate of the tumor was achieved and that my clavicle had fibrous dysplasia. [Finally! I knew what had been wrong with it for so long!]
Recovery: I recovered from surgery very quickly. I was vacuuming my house two days after surgery. I had muscle spasms in my neck due to having two muscles clipped, but that only lasted for two weeks or so. Muscle relaxers kept that in check until the “learned” they were no longer needed. Now, more than six months past surgery, they will still act up from time to time. Normally because I’ve done something I shouldn’t do. Strength has not been affected, the stamina of my shoulder has. I just can’t do heavy lifting as long as I once could.
Life Now: My family is even closer now than we were before. My son knows things about illnesses that most three-year-olds shouldn’t. But, he is so very compassionate of the sick. He has such a big heart; I don’t know exactly what impact this will have on him long term, but I’m glad for the compassion he shows at such a young age. I’m grateful to be able to do all the things I had been able to do before. I may not be able to do them the same way or for the same length of time, but cancer did not stop me from doing anything. In some ways (mentally), the disease actually gave me strength that I didn’t have before.
Thoughts and Hints for Patients: My doctor told me this one at the beginning and it turned out to be so true – You are your best advocate! You have the most at stake in this whole journey, and you are the one who has to live with the choices that are made regarding your treatment. Also, remember that your doctors and nurses are human. They make mistakes- mistakes that can have life-altering consequences. Do not just blindly go along and agree with whatever a medical professional tells you. I would have been treated for TB, with some serious ramifications had I listened to a nurse. I would have also received more than my lifetime dose of Adriamycin because my doctor forgot to write the change in my chart when I maxed out. I saw the nurse with the 2 syringes of the red devil and wouldn’t let her administer it. They finally had to go get Dr. Hamilton and his exact words: “Glad you caught it; I really f’d that up, didn’t I?”
Remember, most of all, you are still you. Live your dreams, go after your goals, be the person you want to be. Cancer can steal a lot from you, but don’t let it steal that!