Chondrosarcoma at the proximal femur
Age at Diagnosis: 17
Date of Diagnosis: December 1971
Hospital: Memorial Sloan-Kettering in New York City
Diagnosis: I first had complaints of bone pain at around age 13. I was examined by an orthopedist and various possible causes (including one leg being longer than the other or “growing pains” from a rapid growth spurt) were eliminated – though no definitive diagnosis was made. A fluke accident 4 years later led me to the emergency room for a hip x-ray. At that time something thought to be a bone cyst was revealed. This was in July/August 1971.
My family was moving out of state later that month – so my parents made the decision to follow-up with a new doctor once we relocated. In September 1971 I saw a new orthopedist who confirmed that he thought I had a bone cyst – but I had started my freshman year of college – and no pressing time constraint was felt – so my initial biopsy was not scheduled until Christmas vacation 1971.
It took about one month – with pathologic consultations with leading pathologists out of state – to come up with a definitive diagnosis: primary chondrosarcoma. In January 1972 I was referred to Ralph C. Marcove, MD at Memorial Sloan-Kettering, who was doing pioneering work with cryosurgery.
Treatment: In December 1971 I had the initial excision and curettage. In January 1972 I had my first cryosurgery in New York. Subsequently, in May 1972 my femur fractured while I was asleep in bed and simply rolled over. I had emergency surgery to implant a Zickle nail (which was custom made for me and overnighted to my home in North Carolina) and to do iliac bone grafts. My local orthopedist consulted with Dr. Marcove – and I then learned that fracturing had always been a risk though I was totally non-weight bearing since January. A year later – in June 1973 – during summer vacation – I returned to Memorial Sloan-Kettering for a repeat biopsy – which indicated repeat cryosurgery should be performed. That was my 4th and final surgery.
I never had any chemo or radiation and was told that neither would be useful in my case.
Recovery: after fracturing, the biggest issue was how to patch me back together. Literally, an affected area as long as mine (maybe 10-11 inches) had never been “bridged” before. In those days, total femur replacement had not yet been developed or perfected. I often say that the Zickle nail arrived with some “how to” manual – because my team of 6 orthopedists had never installed one before!!! Later on I was introduced to Dr. Zickle at Sloan-Kettering – and he and I both got a kick out of that. The good news is that Zickle nails are very stable. Zickle nails are no longer used – because the bad news is they are VERY stable. I have recently found that it’s practically impossible to remove one without re-fracturing the bone. This topic has come up since I’ve now reached middle age and have developed some degenerative arthritis in that hip. It remains to be seen whether the technology will keep up with me. My current orthopedist and I have discussed “resurfacing” – etc. while maybe leaving the Zickle nail exactly where it is.
I was totally non-weight bearing for two and one-half years. During that time I used metal forearm crutches. For another four and one-half years I walked with a cane. At age 24 I was able to go under my own steam, though the “dream” of a completely regenerated long bone never materialized – I think because of the second cryosurgery. I have a femur that looks like a stalk of celery and it always will! I also have a bit of trouble with my knee because of a lack of perfect alignment – which I think surgical techniques have perfected since then.
Life now: Though I missed half my freshman year of college, I made it up by attending summer school (even in the summer I had my second cryosurgery) and I graduated on time with my class. I won’t kid anyone that this whole experience was not very difficult on my family. I have no brothers and sisters – and I never “missed” any until I got sick and wished for my parents that they had other healthy children. Because I was treated in large part out-of-state, it also meant my mother having to take a long leave of absence from her job (years before the Family Leave laws existed) and us being separated from our support group of family and friends. My parents had to take a second mortgage on our home (which I didn’t know about for years) – and my treatment was finally considered “experimental” by the insurance company which we had to fight in New York State. I went on to graduate school, studied abroad as a graduate student (since it wasn’t possible as an undergrad) and ended up living overseas for the better part of a decade. For many years I literally lived with a “5-year Plan” (i.e., finish undergraduate school; finish graduate school; work abroad, etc.) Now, finally – after 35 years I feel I can relax a little bit. The big “push” to see and do and accomplish things has relaxed – and there are not only days, but weeks that go by when I honestly don’t think any more about living with cancer – or having its specter hanging over my head. But it was a long time coming.
Thoughts and hints for new patients: I will give you the same advice my dear great aunt (who had totally lost her hearing overnight as a result of the flu) gave me way back in 1971: If you are going to have something, have something exotic. Be like the Princess on the Pea.
That has always meant to me: It’s okay to complain; you don’t always have to put on a happy face. If you hurt, you’re entitled to say “I hurt today.”
And then I will give you the advice that the wonderful and sadly missed Ralph C. Marcove, MD gave me: “The world is YOUR apple. Take a big bite!”
To me, that means be a person who makes things happen, not a person things happen to. Make a plan (within reason); push forward; see the world; let the world see you – and it’s really okay if you let them know you are the Princess on the Pea!