by Elizabeth Munroz
Remember, there are many different kinds of cancer. Chondrosarcoma begins in cartilage, even though it is referred to as a type of bone cancer and even though it is considered a soft-tissue cancer. Osteosarcoma begins in bone and is not the same thing as Chondrosarcoma, but is often confused (even by doctors) as being the same thing. There are many kinds of bone cancer. The kind of bone cancer that most people are extremely concerned about, and get freaked out about is NOT Chondrosarcoma. Usually other forms of cancer that spread (metastacize) get into the bones. Usually by that time, the patient is very sick. Even though their cancer is spread to the bone, it is not bone cancer. It is still prostate cancer, or breast cancer or whatever that has spread. The cells that are cancerous invading the bone at that time will still be prostate cells or breast cells, or whatever. That is NOT in any way related to Chondrosarcoma.
So, if you are told you have Chondrosarcoma, it is not the end of the world. If you tell others that chondrosarcoma is a form of bone cancer, they automatically assume that you mean the kind of cancer that spread to the bones of their dead uncle (or someone else close to them) and they are horrified. This is NOT the same. As with any kind of cancer, once the pathologist studies your cells, a determination has to be made to give it a grade of aggressiveness. So, for example, in Chondrosarcoma, the grades are from I to IV. Grade I is a very mild form of Chondrosarcoma, very, very slow growing, and easily confused with ordinary Exostoses or Chondroma cells. Even if you do nothing, it would take years for it to grow bigger. Grade II is considered slow growing, too. Grade III and IV are much more aggressive and faster growing. Regardless of the grading of the Chondrosarcoma, the best-known treatment, at this time, is to cut out the tumor AND SURROUNDING TISSUE, including bone, if necessary. The more aggressive the grade, the more surrounding tissue needs to be removed. In the past this meant automatic amputation. These days, this is usually not necessary. Even if part of the bone of an arm or leg is removed, there are medical prosthetics that can be put in to hold it together and keep the affected limb useful. This is very important to remember!! Radiation and chemotherapy are NOT normally a part of treatment for Chondrosarcoma. They are known to not be effective treatment for Chondrosarcoma. Only in very rare cases, new chemotherapy or radiations are being tried on a research trial basis with patients that have very difficult to treat Chondrosarcoma, such as Grade IV in the vertebral column.
I get emails from people all over the world who have been diagnosed with Chondrosarcoma. I have read about it being in the pelvis, rib cage, skull, neck and the usual more well-known places of the body, such as arms and legs. It breaks my heart when people do not understand the facts about their diagnosis. In many countries, patients are not entitled to that knowledge, and often feel terrified and hopeless. Some think that they are just waiting to die, because they just even don't know that they really have a great chance to survive. In the United States, at least, we have laws that protect us. The patient must be informed. This means that we have the right to ask questions and expect complete and honest answers. It means we can ask to see copies of our medical records, read them, and make copies of them to keep for ourselves. (Even if we don't understand what those fancy words mean). We have a right, also, to ask for an explanation of those fancy words, too.
Another thing that concerns me greatly is when someone decides that they are not interested in getting traditional surgical treatment for Chondrosarcoma. Those with lots of money to spend go to clinics all over the world, claiming all sorts of therapies guaranteed to cure cancer. A great deal of money is spent, and in the meantime, a Grade I or grade II Chondrosarcoma gets a few years to turn into a much larger tumor. There reaches a point with cancer cells where they grow exponentially, and suddenly spread very quickly. One patient I know took the "alternative medicine" route and ended up with a 39-inch tumor on his thigh. Finally, he decided to have the "traditional" treatment for Chondrosarcoma. By this time it was too late, and there was nothing to be done to save his leg, so it had to be amputated. Those without a lot of money waste a lot of time allowing their tumors to grow while they seek out healing of all sorts and try diets and vitamin therapies, hoping to not have to resort to surgery. I have nothing against alternative medical treatments. I use them myself, every day. But, I also see regular, "Traditional" doctors.
This brings me to the utmost fact in getting the best treatment for Chondrosarcoma. (I may get some flack on this one!) The best-qualified person to make a diagnosis of Chondrosarcoma is an Orthopedic or Musculoskeletal Oncologist (and his or her recommended Pathologist). A regular orthopedist is not enough.
I hope this has helped some of us to gain better understanding about something we have a tendency to shove under the carpet. Our fear of getting Chondrosarcoma is much greater than actuality. There are only about 1200 cases a year. Oh, and by the way, many of those cases never have MHE in the first place! The majority of the people who email me about their Chondrosarcoma do not have MHE.
Knowledge is power. Let us be empowered by our knowledge of MHE (and the slight possible risk of Chondrosarcoma). I hope this will open up for further discussion."
