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!

Diagnosis: I first attended a doctor for a pain in the shoulder which I thought was just the result of over exertion. The doctor ordered an x-ray and a tumor was found. A biopsy was performed and for the type of tumor it was I was given an injection of cortisone to settle it down. A week later I returned to the doctor with more pain, and a loss of sensation in my right arm and fingers. This time a scan was performed and, believe it or not, behind the first tumor was a second one which was biopsied and found to be Ewing’s Sarcoma.

Treatment: It was felt for some unknown reason not to do surgery (which I found out was the first of many errors by my doctor’s as I have since been told by Doctor’s in the US that monkey’s only really need a clavicle, humans can survive very well without them) just straight in with chemo and radiation neither of which fully managed to control the progression of the disease. I have found since speaking with several Specialists overseas by phone and email, with them having access to my medical records, that basically my entire treatment was wrong from go to woe.

So for me now it is a flight to New York on the 2nd August for 9 days to confer with a board of Doctor’s at Sloan Kettering.

Hopefully, this will give me both some answers and a plan of action, both of which have been abundently and distressingly missing since the very beginning of this terrible journey.

So onward and upward.

Life now: Life for me has slowed down somewhat just due to physical limitations. But I have just started a new business importing designer children’s clothing and this has given me a focus, especially at night when things get a bit more uncomfortable.

My family is coping well because to be honest I am coping well, I never concentrate on what I cannot do just what I can, and just because I cannot do it today does not mean that I may not be able to do it tomorrow.

Thoughts and hints for new patients: All of us I know go through the different stages of grieving once we are diagnosed. I am not saying that my way is the best way or the only way, but I have never said “why me?” because why not me? I am not so special that I should be overlooked by this horrible disease. I have always lived my life with the idea that all of us a destined to take a certain number of steps in this life, not one more and not one less, and what will be will be, and having cancer has not changed my perspective one iota.

My only advice to the newly diagnosed is ask questions, lots of them, and if you are not happy with the answer ask someone else. Trust in yourself that you know what your body is telling you. I wished I had.

All the very best to all those suffering and continuing to fight, and to those who have lost the battle, hopefully saying “no regrets”, bless you.

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.

Being a long suffering Red Sox fan, Oct 27 was my long awaited nirvana. As I hugged a coworker and fellow Red Sox fan I commented that I could now die a happy man. Unfortunately god heard me, apparently he takes such statements literally because the next day the plastic surgeon called and said that the mass was actually a milignant tumor, chondrosarcoma. When I tell that story people tell me I’m sick, my reponse to that is, why, because I like the Red Sox or because I got cancer? Ya gotta laugh or you’ll just cry.

Treatment: I met with my orthopedic oncologist, Dr Susan Bukata on November 1, 2004. She ordered another MRI as well as a bone scan. We both reviewed the results a week later. She would require a vascular surgeon as well since the tumor was resting next to the interior jugular vein. Surgery would require removal of a portion of the collarbone as well as removal of the vein. My surgery was performed on December 9, 2004, I turned 40 on December 10. I spent 4 days in the hospital and I spent 6 weeks on medical leave from work. The hospital was Strong Memorial Hospital located in Rochester NY. They have a bone cancer center there as well.

Recovery: I returned to work on February 2, I spent that month in physical therapy one day a week. PT consisted of stretching, I find that I have full range of motion and about the only thing that is tough is doing pushups or military presses since there is no collarbone to support the weight.

Life Now: I am seeing a mental health professional (shrink) to deal with the fact that I’m suffering from PTS. I have tests every 3 months, and I have found that I no longer look at life in the long term but I parcel it out in three month blocks. My next scans are in six weeks, and I’m already starting to think about them.

Thoughts and Hints for New Patients: Finding these groups was the best thing I could do. I have met some wonderful people that have a way of putting things in their proper perspective. Plus, I was able to learn about my cancer because all the info was right at my fingertips in one compact spot.