Who is Elizabeth Munroz?What does she have to do with this site, and Chondrosarcoma?
Raised in Niagara Falls, NY, Elizabeth presently lives in Watsonville, California. Born with Hereditary Multiple Exostoses, one of the benign bone tumors in her pelvis mutated into Chondrosarcoma. She had seven recurrences from 1967 to 1980. With such long term survival, she wants very much to encourage others with the diagnosis to have hope, and get help.
Elizabeth is the Founder and Administrator of the Chondrosarcoma Support Group.
You may learn more about Elizabeth's Chondrosarcoma Journey at the following links.
Elizabeth's Sarcoma Blog
Elizabeth's story on the Adult Bone Cancer site.
Elizabeth's childhood story of Multiple Hereditary Exostoses (suitable for children)
Elizabeth's article written for Sarcoma Alliance "Your New Normal" about how life is after cancer.
Elizabeth's story on Sarcoma Alliance
About Elizabeth written by Mimi Olsson
Personal Statement:
All Chondrosarcomas are not the same. (Just like heart attacks, there are different kinds and different methods of effective treatment). First, there is the differences of grades, then there is the type, then the size of the tumor, then the location in the body, and age/condition of patient. All these things have to be taken into consideration. So, for example, if there is a healthy young male with a large grade 3 dedifferentiated chondrosarcoma in the pelvis, he would receive different treatment than a retired lady with a small grade 1 in forearm. Both would probably have surgery. But, the first one would be necessarily much more radical.
First and foremost, total surgical ablation, is the ideal treatment to begin with for most chondrosarcomas. (some surrounding tissue that is not chondrosarcoma must be removed with the original tumor in order to be sure they "got it all") However, if tumor is not easy to cut out, such as those located within the skull near the eye, or at the base of the ribcage in the spine, for example, very highly talented doctors who have experience treating these type of cases must be involved in the patient's care. In all cases, post treatment, it is watched very carefully to be sure that recurrence does not happen, and if it does, immediate treatment must be begun.
Recurrence seems to happen for varying reasons: If the tumor was not cut out completely with surrounding unaffected tissue. And this is not entirely avoidable. How can one tell if there is a molecular piece of CS still inside the body if one has removed everything possible that one sees with the naked eye, and verified by scans? If the tumor was attached to or growing into other organs, sometimes something can be left behind. It comes down to doing radical amputation or trying limb salvage in the hopes that there is no residual tumor. If the tumor was located in a part of the body which is difficult to "clean out" If the tumor was particularly large Also, the higher the grade, the more possibility of a recurrence.
When biopsy is done, that is when it is determined the type of and grade of chondrosarcoma. Patients have the legal right to be fully informed regarding their condition. Get a copy of your biopsy report as well as the post-surgical pathology report, and then you can know for sure what yours is. The higher the grade, the more likely that the cellular matter can develop more than a cartilaginous (chondrosarcoma) tumor and begin to show aspects resembling bone, and to behave more like another sarcoma. If this is the case, then sometimes chemo or radiation are considered useful.
Also, regarding Clinical Trials, which are not the usual standard treatment, the FDA requires that techniques and treatments used in clinical trials be tested for years, first on the molecular level, then on the veterinary level. Then, finally, it gets to be tried out on human subjects who are willing to take part in the research protocol being offered, with carefully qualified physicians who have signed up to administer these treatments under very strict scientific requirements.
In the past, it was taught that surgery was the "only" method to use with chondrosarcoma. However, improvements in the methods used in chemo and radiation (and other treatments) are now showing some more possibilities for soft tissue cancers, such as some forms of Chondrosarcoma.
It is important for anyone diagnosed with chondrosarcoma to be seeing a doctor who is very qualified to treat it. Since there are approximately 200 chondrosarcomas diagnosed per year, in the US (for example) the most qualified doctor to see would be a Musculoskeletal Tumor Specialist or Orthopedic Oncologist at the nearest possible University Medical Center. If the chondrosarcoma is located in the head or chest, then an expert neurosurgeon or thoracic surgeon who has worked with chondrosarcoma patients in the past would be important to be referred to! Deciding on a doctor because it is a matter of convenience is not the best way to get expert care for Chondrosarcoma. One needs the best possible care to spare one’s life regardless of the inconvenience to get treatment. Would you take your BMW (if you had one) to the corner gas station for a major repair? Would you take your baby to the local drugstore for suggestions for treatment if the child needed expert care? By the same token, take your precious body to a specialist who has experience with chondrosarcoma. And, if necessary, get a second opinion!
Elizabeth's 2004 interview from the Livestrong site.
If I can help further let me know by leaving a comment. It will remain private unless I approve it to be shown. If you leave personal contact information in the comment, I will not make it public.
Join the Facebook Chondrosarcoma Support Group Community where you can information and answers from many others facing the same issues.
https://www.facebook.com/groups/Chondrosarcoma.Support/
If either of those methods wont work for you, call my home phone only between the hours of 12 noon and 9pm Pacific Standard Time. Please respect the times or your call will be ignored.
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