Ad’s Story

Ewing’s Sarcoma at the Distal Femur
Age at Diagnosis: 17
Year of Diagnosis: 1978
Location: The Netherlands

Diagnosis: It started with pain in my left leg, above the knee. Every approximate six weeks the pain came together with a swelling of the leg. Every time the pain and swelling disappeared after a couple of days. Since it always seemed to appear just before a weekend, I did not go to the doctor the first times. I tried to keep on walking and doing all the things I normally did but the pain became worse and worse so I had to rest more and more. And so I went to the doctor.

Treatment: In May 1978, a piece of the bone was removed for research. There never came a clear result and they lost the piece of bone. In October 1978, a second piece of bone was removed. At that time, a professor from Leiden (Netherlands, where I live) attended the operation and the orthopedic surgeon and his teacher (the professor) decided how much they would remove from the bone. At that time they did not know it was cancer.

The result came after a week. At that time I was transferred to a specialised cancer clinic (Daniel den Hoed clinic, Rotterdam) where I was treated by a radiologist and an internist. I received up to 6600 rads of radiation (first sessions the entire femur, later the radiation field was focused to the place of the tumor). I received chemo: Endoxan, Oncovin, Vinchristine, Adriamycine during a period of one and a half year.

Recovery: After the second operation, I did not have many problems with my leg for a period of about 17 years. Only a small part of the bone was removed and it seemed that this had healed. They never found a trace of cancer anymore. The chemotherapy was the hardest. But I managed to finish school and to finish university. I have my degree on economics.

There was no recurrence or metastasis. But after 17 years I slipped on a wet floor and broke my left femur on the place where the tumor had been removed. First it seemed a normal broken leg, but after some time it appeared that the bone of my femur had become brittle due to the radiation. I broke my femur 3 times and the ‘hardware’ in my leg a few times more. Now – after 7 operations in a period of 10 years – my femur consists of the original bone, bone from my pelvis and a vascularised graft of my right fibula. I still can walk a bit (with crutches) and bend the leg up to about 90 degrees. The doctor says there still is the risk of breaking the leg again. Recently it is found that there is some heart damage due to the chemo. This was caused by the Adriamycine. I seemed to have had a very high dose of it.

Life Now: It’s been so long after having cancer and in some parts of life I succeeded, and in some parts I did not succeed.

• Education very well but now I am not able to work anymore.
• Married but no children.
• There is not much contact with family. I have been ill too long and most of them lost their interest in me. I also changed and therefore we seem to live in another world.

But the good part is that I have a very good marriage, some very interesting hobbies (making miniatures, genealogy, reading, music), I have a cat and a dog and my mobility is quite acceptable. Walking is not so important anymore but I can drive a car, walk a bit on crutches and I have a scootmobile.

Thoughts and Hints for New Patients: Life after cancer can be very long and very valuable. But the treatment like operation, chemo and radiation often cause permanent damage and this damage may occur after a long period of time. Also there may be psychological ’scars’ especially when people were young when they got cancer. At the time that this occurred to me, it became very important to find other long term survivors to exchange experiences and find others that really understood my feelings. I found such a group on the internet. And finally it is very important to keep your own records about the cancer you had, the treatment and all the things that happened afterwards.