This site is being maintained by a patient who has survived Chondrosarcoma. I am not a physician. I have no medical professional degree. I am an average person, a patient, who has long term survival, and no recurrence of Chondrosarcoma for many years.
I have learned many things along the way about Chondrosarcoma. I am sharing here what I have learned, and providing as much appropriate information as possible to the best of my ability, and understanding in words the average person can comprehend.
It can be very confusing to research Chondrosarcoma on the internet. There are so many kinds of Sarcoma, and one can get confused sorting out the facts. Over the years, some of my doctors have taught me a great deal. I have attended college courses, including pre-med. I have learned how to do appropriate research on how to find authentic, peer reviewed scientific articles on Chondrosarcoma. I hope to save others from having to spend their lives trying to learn about Chondrosarcoma on their own.
If I can help just one person to get through their experience with Chondrosarcoma, then all my years of going through it alone, and never knowing another soul with the same diagnosis, will have been worth it.
The most valuable lesson I learned from my experiences with Chondrosarcoma? It is imperative to ask questions, get answers, then ask more questions and get more answers. Also, go for a second opinion if necessary, with those most qualified to make the diagnosis and treatment.
Doing this bothered me at first. I wasn't used to questioning doctors and insisting on answers, but it was worth it to be a little uncomfortable. After all, it was my life and my health at stake.
*Note: Chondrosarcoma in English, is pronounced ( KAHN - dro - sar - KO - ma )
In order to understand chondrosarcoma, it is useful to know about normal bone tissue.
What is normal bone tissue?
Bone is the supporting framework of the body protecting internal organs which support the muscles. A medical word for bone is osteo. A medical word for cartilage is chondro.
New bone is constantly forming, and old bone is constantly dissolving and contains two kinds of cells to do this. The cells that form new bone are called osteoblasts. The cells that dissolve bone are called osteoclasts. Bone is constantly regenerating. Although slower after age thirty five.
Most bones are not made of solid bone all the way through. Adult bones are made up of three types of tissue called compact, cancellous and subchondral.
What is compact bone tissue?
The hard, outer portion of most bones consists of fibrous tissue which creates the base onto which calcium is deposited. This is what makes the most solid part of the bone.
What is cancellous bone tissue?
Cancellous tissue is the spongy part inside the bones that contains bone marrow. Most people think of this part of the bone as "hollow." But, it is not. The marrow of some bones consists only of fatty tissue. The marrow of other bones is a mixture of fat cells and blood-forming cells where they are created and stored until ready to move into the bloodstream. There are some small amount of other cells, too.
What is subchondral tissue?
Subchondral tissue is the smooth bone of the joints where a layer of cartilage covers each end of the bone to cushion the joint movement. This is where chondrosarcoma usually arises.
Cartilage consists of a fibrous tissue mixed with a gel-like substance, and does not contain calcium. The only kind of cells in cartilage are known as chondrocytes.
What is abnormal bone growth?
Abnormal bone growth can result in bone deformities, lesions or tumors. There are several different types of bone tumors. The names are based on the area of bone or surrounding tissue that is affected, and the kind of cells forming the tumor. Most primary bone tumors are benign (not cancerous).
Benign bone tumors:
Benign bone tumors do not spread to other tissues and are not life-threatening. Types of benign bone tumors include osteoma, osteoid osteoma, osteoblastoma, osteochondroma, (also known as exostoses), enchondroma, hemangioma, and chondromyxoid fibroma. Sometimes these may be treated by surgery if they cause problems.
There are other types of malignant bone tumors aside from chondrosarcoma that are also sarcomas. Sarcomas are cancers that mostly develop from bone, cartilage, muscle, fibrous tissue, fatty tissue, or nerve tissue and are identified according to which tissue is rapidly growing.
For better understanding of medical words, go to google and type in DEFINE: and add the word you are seeking (yes, use DEFINE: all in caps with the colon afterward, then skip a space and add the word you want defined.)
Chondrosarcoma is a rare form of bone cancer. It develops from normal cartilage which goes through malignant change, or can form within a pre-existing benign tumor called osteochondroma, or enchondroma.People who have chondrosarcoma have a single tumor growth which can vary in size and location.
Chondrosarcoma is common to humans as well as animals. All patients are not the same in how they are affected. The surgical treatment methods of their doctors are not always the same, either. Each case has to be considered on it's own specific circumstances. Chondrosarcoma can be referred to by various other names too, depending on the type of cells identified by looking at them under a microscope. It is the second most common primary bone cancer.
It is important to understand the difference between a benign and malignant bone tumor. Benign bone tumors are not sarcomas. Benign bone tumors do not spread to other tissues or organs, and are not life-threatening. They are generally removed by surgery if there are certain symptoms accompanying them. Again, these are not malignant.
Malignant primary bone tumors are so rare that only two/tenths of a percent of all new cancers. According to the American Cancer Society, "in 2008, about 2,380 new cases of cancer of the bones and joints will be diagnosed in the United States." Remember that means all primary cancers of the bone. Chondrosarcoma is just a small part of that count. In comparison to Breast Cancer, which has been stated as nearly 800,000 annually (in 2006) according to the Susan G. Komen website, bone cancers are very rare
The most common type of bone cancer is osteosarcoma, which develops in new tissue inside growing bones. Evidence suggests that Ewing's sarcoma, another form of bone cancer, begins in immature nerve tissue in bone marrow. Osteosarcoma and Ewing's sarcoma tend to occur more frequently in children and adolescents, while chondrosarcoma occurs more often in adults.
Generally, Chondrosarcoma has a better outcome than osteosarcoma. The treatment options for both these cancers are different. Treatment for chondrosarcoma is less invasive than treatment for Osteosarcoma. Treatment for chondrosarcoma commonly only involves surgical removal of the tumor and surrounding tissue.
Recurrence rates for chondrosarcoma are less than osteosarcoma. Recurrence of chondrosarcoma occurs in the same location as the original tumor or very close to it. Recurrence are rarely found in other parts of the body. Metastasis is not considered recurrence.
Chemotherapy and Radiation treatments are more frequently necessary in osteosarcoma. As of May 2009, chemotherapy and Radiation are not effective and will not produce a cure in chondrosarcomas. If clear margins are done in the original surgery, the likelihood is considerably less. If the tumor is quite large or has an aggressive grade, amputation, partial amputation or limb salvage surgery may be necessary
If the Chondrosarcoma is located in the skull base, Proton Beam Radiation has been very successful in halting further growth along with necessary surgery. Regular radiation is not sufficiently strong, or as targeted to the tumor as Proton Beam radiation is. Sometimes Proton Beam is used in spinal Chondrosarcoma, and recently some attempts are being made with pelvic chondrosarcoma. Still, surgery is necessary.
Keep in mind that the percentage for full recovery in chondrosarcoma patients is much higher than in osteosarcoma. It is absolutely necessary to have frequent follow up x-rays and scans in order to verify there are no recurrences for at least five years and sometimes eight years. (This is up to the discretion of the doctor). Even if there is a recurrence, there are good chances for long term survival.
Chondrosarcoma is NOT the type of bone cancer that spreads from other organs to the bone. That is called metastatic bone cancer which might be located in more than one bone. A typical example is when lung, kidney, liver, breast or other cancer spreads to the bones as part of their metastasis. Examination of the cells of metastatic bone cancer look like the original type of cancer cells, (prostate, or liver, breast etc.)
These are other types of bone cancer which are NOT bone cancers produced from other types of cancer.
Chondrosarcoma Ewing's Sarcoma Fibrosarcoma Malignant Fibrous Histiocytoma Giant Cell Tumor of Bone Chordoma Lymphoma Leukemia Multiple Myeloma Osteosarcoma
Chondrosarcoma is not contagious. It cannot be passed on to another person by exposure to a chondrosarcoma patient. Although scientists are not certain what causes chondrosarcoma, a number of factors may put a person at increased risk.
Certain hereditary or genetic conditions are a bit more likely to develop Chondrosarcoma than those who do not have these conditions. Ollier's disease, and Maffucci Syndrome are caused by gene mutations and are not hereditary. Multiple Osteochondromatosis (AKA Multiple Exostoses) is hereditary.
People affected by these conditions are more susceptible because they already have existing benign bone tumors (sometimes mistakenly called bone spurs) which have a chance of becoming malignant. People with these conditions, who experience sudden growth spurts, or increases in hormone production, such as pregnancy, have an increased possibility of a primary benign bone tumor changing into a Chondrosarcoma.
There are other rare conditions which are more likely to pre-dispose to Osteosarcoma. But, some cases are also known to have developed Chondrosarcoma. These are the following.
Retinoblastoma, which is a cancer of the eye, often affects children much more than adults.
Li-Fraumeni, a hereditary syndrome, runs in families where a high percentage of different kinds of cancers occur. These families can be tested. If they do so, and learn which family members test positive, they can be followed closely by their physicians. If they develop a cancer, it can be detected earlier than if they do not receive regular check ups.
Rothmund-Thompson syndrome is a rare condition in itself and there are some occasions of an extremely rare occurrence of Chondrosarcoma.
Paget's Disease, is a non-cancerous condition characterized by abnormal development of new bone cells in which adults are at increased risk for osteosarcoma or chondrosarcoma.
There are Chondrosarcoma patients who do not have any of these above conditions.
Some researchers have reported that a previous traumatic injury to the bone have been a possible suspected cause for Chondrosarcoma, but so far this idea is not entirely accepted since there is a controversy and no universal agreement among all sarcoma specialists, though there are often medical articles discussing Chondrosarcoma developing at sites of previous healed fracture.
Some evidence exists that environmental exposure can pre-dispose a person to chondrosarcoma. An example of this known possibility is exposure to known carcinogenic chemicals. There is a question of gardening chemicals such as Agent Orange, also known as Dioxin.
People who have previously had radiation are prone to develop Chondrosarcoma, also.
Recently, chromosomes in the genes have been shown to have specific locations where the genetic information for chondrosarcoma resides. Continuing research of the genes and how the proteins encode for them will give tremendous insight into the growth of cells.
This information is important since chondrosarcoma is a problem with the growth of cells. Understanding the gene and the function of its protein might eventually provide the knowledge leading to better treatment. Some researchers feel there actually may be hopes that genetic manipulations could treat or prevent chondrosarcoma which may be possible in the future.
The gene mapping studies will serve as the basis for the testing of patients at risk for chondrosarcoma. Information from this kind of testing could lead to the prevention of the development of Chondrosarcoma. And it is hoped that physicians could be equipped to perform such tests in the future. NOTE!!! This update of September 26 2012: A pair of genes have been found that show up inside of chondrosarcoma tumors. Researchers looked in cells from many different chondrosarcoma tumor samples and found that these two genes, called IDH1 and IDH2, were mutated. This shows that they are involved with changing healthy cells into malignant ones. The genes are in the tumors themselves and have nothing to do with genetic inheritance from ones family. This is not the case with all chondrosarcoma tumors, but with many of them. Further research will provide the opportunity to create a drug which can target and attack the mutations. These mutations also show up in some other rare cancers, too.
The first symptom may be a solid mass or lump. Pain is often a common symptom of chondrosarcoma. Although some patients do not experience pain and their tumor is discovered quite by accident. Often, chondrosarcoma is overlooked as a possible diagnosis. Many months may go by before it is discovered. This is unfortunately normal unless scans are done in the beginning of the process of diagnosis.
Symptoms of chondrosarcoma may vary depending on the location and size of the cancer. If the mass interferes with a function of the body, it may cause other feelings such as pressure against other organs in the area of location. Tumors that occur in or near joints may cause swelling or tenderness in the affected area and interfere with normal movements and can weaken the bones, occasionally leading to a fracture.Often chondrosarcoma goes undiagnosed or misdiagnosed at first because the symptoms can mimic other conditions. There can be sciatic-like pain if located in the pelvis or thighs. Nerve damage or vascular compromise can occur when a tumor is pressing on them, too.
The primary symptoms of chondrosarcoma do NOT cause symptoms of fever, fatigue, hair loss, weight loss, or night sweats the way that some other cancers do. These type of symptoms may develop if the chondrosarcoma patient goes through chemo or radiation, which is rare.
Chondrosarcoma can be located in the body anywhere cartilage is found. The adult human skeleton has 202 to 206 bones, most of which have cartilage. Though some locations are more common than others. Most are commonly found in the pelvis, rib cage, arms, and legs.Although any bone can be affected, the long bones (legs, arms) pelvis and shoulder blades are the most common. While the face and skull are generally unaffected, it is not unheard of. Occasionally chondrosarcoma has been found in the spine, fingers or toes. It is extremely rare to find chondrosarcoma in any internal organs. If Chondrosarcoma metastasizes, it most frequently spreads to the lung.
If Chondrosarcoma is found in the skull it is usually found in the skull base, beneath the brain, or near the orbit of the eye, or behind the sinus cavity, occasionally in the jaw.
See this list for doctors qualified to treat chondrosarcoma of the skull.
See this list of Otolaryngologist/Ent Surgeons who can treat chondrosarcoma of the sinus cavity or larynx
If Chondrosarcoma is found in the region of the neck, it can be located in the cartilage of the larynx, (hyoid or cricoid) or the cervical spine.
Chondrosarcoma is more frequently found in the upper arm, (the humerus). It is less frequently found in the forearm where two bones are located, 9the ulna and the radius). Very seldom is it found in the hand or fingers.
Chondrosarcoma can be found in the upper leg, (thigh bone) medically known as the femur. If the tumor is located high up on the femur near the joint of the pelvis, people often mistakenly say the tumor is in the hip. This area is called the proximal femur. The lower part of the thigh bone is called the distal femur.
The part of the leg that is below the knee has two bones in it, called the fibula and tibia. Chondrosarcoma is located here less often than the femur. Again, the upper parts of these bones are called the proximal and the lower part is called the distal. It is very seldom found in the foot.
Chondrosarcoma can be located in any of the vertebrae from the neck all the way down to the tail bone.
Trunk of body:
There are many bones that make up the trunk of the body. Chondrosarcoma can be found in almost any of them. Some locations are less affected than others.
Scapula (shoulder blade)
Sternum (holds the rib cage together)
Pelvis (made up of ilium, ischium, pubis and acetabulum)
Once chondrosarcoma is found, biopsy tests will be done to find out if the cancer cells have spread to other parts of the body. This is called staging. The doctor needs to know the stage of the cancer in order to plan treatment.
There are several staging systems for chondrosarcoma, but no single staging system applies to all types of this cancer. The treatment options in this summary are based on whether the cancer has spread or the amount of tumor left after surgery. The general non specific stages of chondrosarcoma are non-metastatic, metastatic, and recurrent. Treatment by stage If the Chondrosarcoma is stage I or II the treatment option may simply be surgery to remove all of the cancer. Patients may undergo close monitoring with CT scans on a regular basis to be sure the tumor does not place any vital organs in danger, or if complete removal of the tumor is not possible, or if the tumor comes back following surgery. Sometimes a second operation must be done to be sure that all the tumor has been removed, or if the tumor comes back following treatment. No recurrence of tumor after five years is considered to be cured.
If a patient has symptoms of a chondrosarcoma, the doctor may need to perform a physical examination based on the symptoms described by the patient. If the patient has a firm, mass attached to the underlying bone with pain or tenderness, this may be an indication to suspect Chondrosarcoma. Recent noticeable growth of a lump, pain and swelling are often the most common complaint. Sometimes, however, there is no obvious evidence of pain and the diagnosis can be confused. There is usually no swelling in any adjacent joint, and range of motion is normal unless tumor has grown large enough to interfere. Fracture of the involved bone is rare. However, in some patients this is the first indication that chondrosarcoma may be present. Systemic symptoms can be associated with the size and location of the tumor. For example, pelvic tumor can present with sciatica, numbness or tingling, extra bladder pressure, or bowel problems. Tumor located in the rib cage can cause pressure upon the lungs, heart, liver or stomach.
In order to determine the diagnosis properly, the doctor may order x-rays and other tests such as a CAT scan, MRI or bone scan. One of these tests, alone, is not enough to determine the diagnosis. So, a combination of these tests helps to reveal the size and characteristics of the tumor and adjacent tissue.
The Radiologist may detect changes consistent with Chondrosarcoma which is most often present on x-ray film as ill-defined lesions with a moderate-sized to large soft tissue component and often demonstrating calcified cartilage. Cat Scan, MRI, Bone Scan, and Ultrasound will give further clarification, and definition of the tumor, and/or in order to determine if other organs are involved.
What do Radiologists look for in a bone scan? (paraphrased from http://gamma.wustl.edu/bs087te143.html) "Benign Osteochondroma (exostosis) may show normal to dramatically increased bone uptake. Osteochondroma (benign bone tumor) is relatively uncommon in the spine (1-4% occur in the spine and account for 4% of solitary primary spine bone tumors).
Normal to mild uptake in an exostosis generally excludes malignancy. However, marked uptake is not specific for malignant degeneration. More intense uptake is seen in growing children. Fracture, of course, results in intense uptake. Thus, the role of bone scan in exostosis or multiple hereditary exostosis is questionable. Thin-slice CT may provide the diagnosis if marrow and cortical continuity can be demonstrated. MRI will show the characteristic cartilaginous cap (intermediate on T1- and high on T2-weighted images). If this cap is greater than 1 to 2 cm in thickness, concern must be raised of chondrosarcoma.
Chondrosarcoma, the second most common malignant spinal primary bone tumor, is a destructive, lytic tumor with a chondroid matrix consisting of "rings and arcs" radiographically. Cortical destruction is always present (excluded by CT in this case). A soft tissue component is common. In bone scan, these produce patchy or homogeneous increased uptake."
According to an article entitled: Enchondroma and Chondrosarcoma By Flemming DJ, Murphey MD "The judicious use of computed tomography, magnetic resonance imaging, and nuclear medicine in conjunction with appropriate clinical data allows the radiologist to establish the correct diagnosis of benign or malignant medullary chondroid lesion in the majority of cases."
There are no blood tests available at this time useful for diagnosing Chondrosarcoma. Blood tests will eliminate the possibility of other kinds of bone cancer.
Once sufficient studies have been done the doctor may also cut out a small piece of tissue and have a pathologist look at it under the microscope to see, if there are any cancer cells. This is called a biopsy. Return to Questions
Chondrosarcoma can be classified in some of the following ways depending on location of the tumor in the body, and the type of cells in the tumor, as determined by the Pathologist within about two weeks of the surgery.
* Clear Cell (CCC) is commonly considered to be a low-grade subtype and less than 1% of chondrosarcoma.
* Conventional - (also known as central) is a low-grade conventional malignant cartilage-forming tumor and makes up approximately 90% of all chondrosarcomas
* Dedifferentiated - high grade sarcoma next to a, comprising 6-10% of all chondrosarcomas
* Extraskeletal Myxoid (EMC) is found in the extremities (5%)
* Juxtacortical (2%)
* Mesenchymal (2%)
* Peripheral - found on the surface of bone within the cartilaginous cap of a solitary chondroma. (15%)
* Secondary - due to pre-existing benign tumor
The following are other ways in which chondrosarcoma may be described.
1. Nonmetastatic Chondrosarcoma
The cancer is found only in the area where it started and has not spread to other parts of the body.
2. Metastatic chondrosarcoma
The cancer has spread from where it started to other parts of the body, in most cases, the lung.
Patients who have metastatic chondrosarcoma will rarely receive chemotherapy, radiation therapy, and surgery to remove the cancer that has spread to the lungs.
3. Recurrent chondrosarcoma
The cancer has come back (recurred) after it has been treated. It may come back in the area where it started. A recurrence is rarely found in another part of the body.
Treatment for recurrent chondrosarcoma depends on treatment received previously, the original biopsy staging results, the part of the body where the cancer has come back, and general condition of the patient. Amputation is sometimes necessary and life saving.
What is the possibility of recurrence? Once removed, chondrosarcoma can come back later, but may not immediately re-grow to a size large enough to be symptomatic or as noticeable of the original tumor. It is imperative to have follow-up appointments with the doctor in order to keep track of any further re-growth. Follow up should include scans. The distinction between a recurrence in the same location and recurrence in a different part of the body makes an important difference. A recurrence in the same location, or close to the original tumor is considered to be non-metastatic. A recurrence in a different part of body, usually the lungs, is considered metastatic chondrosarcoma, and more serious.
The chance of recovery, (prognosis) depends on the type, location, and stage of the tumor. The chance of recovery also depends on the age, size of the tumor, stage of development, and general health of the patient. In the year 2000, about 2,500 new cases of cancer of the bones and joints were diagnosed, and about 1,400 deaths from these cancers were the expected outcome. Primary cancers of bones account for less than 0.2 percent of all cancers. What are the percentages of cancers that are bone cancers? Osteosarcoma is the most common primary bone cancer (35% of cases) followed by chondrosarcoma (26%) Ewing's tumor (16%) chordoma (8%) malignant fibrous histiocytoma/fibrosarcoma (6%) Several other more rare cancers account for the remainder of cases. The long term prognosis for people with primary bone cancer varies greatly, depending on the specific type of cancer and how far it has spread. If you have questions about your personal chances of cure of bone cancer, or how long you might survive such a cancer, it is always best recommended to talk with the people who know your unique circumstances best - your Musculoskeletal or Orthopedic Oncology care team.
Chondrosarcoma will continue to grow and become more aggressive, the longer it is left in the body. Depending on the location in the body, it can cause considerable problems with other organs. Chondrosarcoma on the rib cage, for example, can grow to the point of puncturing a lung or causing problems with the heart. Chondrosarcoma in long bone, such as a leg or arms, can eventually cause spontaneous fracture. Chondrosarcoma located close to the joints can cause separation of the joints. Untreated chondrosarcoma can cause tears in muscle or ligaments, cause severe nerve damage with numbness or prevent blood from flowing properly through the vasculature resulting in clotting or crippling. Untreated Chondrosarcoma, depending on the staging, can be so aggressive as to cause death.
Radiation and Chemotherapy are not common methods of treatment for Chondrosarcoma. Only rarely are radiation and chemotherapy used on a patient with Chondrosarcoma. The decision to do so, depends on the advanced staging of the tumor and the type. More aggressive forms of Chondrosarcoma are given the designation of Stage III and Stage IV. If it is considered to be an aggressive or advanced chondrosarcoma, chemotherapy or radiation may be considered as part of the treatment plan. If you are not being treated by a Musculoskeletal Oncologist (Bone Tumor Specialist) question your doctor as to why one is not included in your medical care, Ask why radiation or chemotherapy is being offered and what medical evidence there is for usefulness of such treatment for chondrosarcoma. Ask if you are being offered radiation or chemotherapy as part of a research protocol. Very rarely, if the Chondrosarcoma is dedifferentiated, then radiation therapy, or chemotherapy to reduce the tumor size may be followed by surgery to remove the cancer. Chemotherapy uses drugs to kill cancer cells. Chemotherapy may be taken by mouth in the form of a pill, or it may be put into the body by a needle in a vein or muscle. Chemotherapy is called a systemic treatment because the drugs enter the bloodstream, travel through the body, and can kill cancer cells throughout the body. Radiation therapy uses high-energy rays to kill cancer cells and shrink tumors. Radiation may be given before surgery or following surgery, if the surgeon is unable to remove adequate tissue surrounding the tumor. Radiation may come from a machine outside the body (external radiation therapy) or from putting materials that produce radiation (radioisotopes) through thin plastic tubes into the area where the cancer cells are found (internal radiation therapy)
Sometimes chondrosarcoma grows near nerves or tendons and press on them. Surgical removal of the tumor is imperative so damage won't occur to the nearby structures.Due to the necessity of complete removal of chondrosarcoma to prevent metastasis a large amount of body tissue may be affected, including possible partial amputation. Improvements in proper medical care for chondrosarcoma patients often include limb-sparing techniques which may prevent such outcomes. Other possible long term effects of chondrosarcoma are: Healing and Recovery A return to as good health
Pain Scars Deformity Nerve damage Early onset of Degenerative Osteoarthritis Bio-mechanical and musculoskeletal problems Depression Post Traumatic Syndrome
Since it is a rare condition, there are not a lot of people available to form a local support group in your neighborhood or town, even your city. As a person with cancer, it would be appropriate to participate in other types of cancer support groups, if you choose. But the uniqueness of Chondrosarcoma has a tendency to make one feel isolated and confused when communicating with patients with other kinds of cancers. Often, patients with other cancers are more debilitated or sick. The Chondrosarcoma patient can appear to be deceivingly healthy. This sometimes leads to questions by others who have never heard of Chondrosarcoma. Online, Chondrosarcoma patients can join together and share their unique experiences through the "Chondrosarcoma Support Group", which was founded and moderated by the author of this website in January 2001.
Whether you are newly diagnosed, not sure yet, or have already been through it all, you will find a good place to share common interests with others who can understand what you are experiencing within the Chondrosarcoma Support Group.
If you are the loved one, friend, family member, caregiver, or medical person (who works with Chondrosarcoma patients) you may also join the support group.
Click HERE to join. A moderator will approve your membership as soon as possible.
Signing up for the Chondrosarcoma Support Group involves applying, and waiting until a person can approve your membership. Your approval may be instantaneous, or it may take up to 24 to 48 hours. This will all depend on what time of day you apply, and whether the Moderator is sitting at the computer when your application comes in. So, please do not be discouraged if it takes a little while. It will be well worth the wait.
After your membership has been approved, it will be up to you how much you wish to share with other chondrosarcoma members in your communications. No matter where your chondrosarcoma is located, (from head to toe) there is someone in the group who has had the same, and can fill you in on their own experiences.
You don't have to be alone in your situation. There are others with chondrosarcoma diagnosis who have been where you are, and they are already members of the group and wanting to help you get through it.
Further comment: When you have a well known cancer condition you can pick up just about any magazine to read the latest article on the subject. You can turn on the television and the evening news will give a spot featuring your condition. Your local hospitals, community centers or adult schools offer classes on how to improve your chances for survival. You can always find a support group with real people participating in them right there in your own home town. There is a large proportion of the population with these well known conditions who can make contact, enjoy one another's company, share knowledge and information regarding their condition and support one another through the hard times.
But, you don't have these opportunities for knowledge and understanding of Chondrosarcoma. Not only do you NOT find articles in magazines, news reports, educational classes or support groups, but in all likelihood you will not find another single person in your daily life with the diagnosis of chondrosarcoma. (The exception now is the internet.) Even most doctors are not very familiar with Chondrosarcoma. Orthopedic Surgeons will know more. But Orthopedic Oncologists are best informed and qualified to take care of Chondrosarcoma patients, or can refer you to other sarcoma specialists if you have an unusual location that requires another type of surgeon Why is there so little information available about chondrosarcoma as compared to other kinds of Cancer?
Chondrosarcoma is a rare condition, even though it is the second most prevalent form of bone cancer. Rare conditions are often referred to as "orphan diseases". It is one out of many kinds of sarcoma. There are somewhere between 50 and 70 kinds of sarcoma. Less than one percent of all adult cancers are sarcomas.
Rare conditions do not get the attention and funding for research. If there is little research available, there is little information
Before the internet, it was difficult to find sources for the public reader on the subject of chondrosarcoma. Medical research articles on it were found in orthopedic medical journals, and occasionally in other specialty periodicals when a patient with chondrosarcoma had it located in a part of the body affecting another specialty. Since it was not a condition many people could identify with, journalists didn't favor writing about it. Even now, with the internet, the plethora of articles and medical information regarding other conditions is like the Himalayas in comparison to articles available on chondrosarcoma, which are like finding a grain of sand. Presently you can find a good source for information on chondrosarcoma at PubMed.
I'm writing my story to encourage people not to worry too much while awaiting a confirmed diagnosis. Sometimes there's a happy ending
One day, I visited an orthopedist because of pain in both my knees. X-rays revealed a minor problem with the kneecaps, but they also revealed a 4 cm tumor in my distal right femur. I was told it was probably a benign enchondroma which rarely becomes malignant, and as long as there was no pain, I shouldn't worry about it.
Unfortunately, three weeks later my leg started to hurt more. At first I told myself it was unrelated to the tumor, and perhaps I had simply injured myself during exercise, in which case it would soon heal. But four weeks later, the pain was keeping me awake at night.
I did some research and learned that dull, persistent, night-time pain is one of the primary indicators of malignancy. At that point, there was reason for concern, so I was sent for an MRI. It revealed an uneven uptake of the contrast dye, indicating a possible chondrosarcoma.
I then consulted with two orthopedic oncologists who both agreed the tumor should be removed. They said that a biopsy should not be done with this type of tumor because if it were malignant, there's a risk of releasing those cells into the body. I was also told that it's difficult to differentiate a benign enchondroma from a low-grade chondrosarcoma because even with xrays and scans, they tend to look the same. So the surgery was performed as if it were a known cancer. The surgeon carefully scraped out the tumor, then used a heat tool to burn the bone cavity and kill any remaining tumor cells.
I had the tumor slides sent to the Mayo Clinic Pathology Lab because they have extensive experience in studying bone tumors. The pathologist studied the tumor slides plus the MRI films, and I received good news: The tumor was benign!
Rich - Chondrosarcoma of Pelvis - Sacrum
My tumor was on the left side of my sacrum. My sacral nerves (S2-S5) on the left and S5 on the right were removed along with laminectomies at the lumbar spine (L4-L5) to remove nerve roots. I haven't experienced or remember experiencing post surgical pain caused by the tumor removal because of this. I have permanent numbness that has lessened over the years on the left side of my butt, part of my groin, and down my left leg to my knee. Those nerves taken also affect my bladder. I thank Dr William Shaffer for doing such a great job on the spine part of my surgery.
A few words of wisdom about "Scanxiety" By Annie
Regarding following up with scans after your first surgery.
Chondrosarcoma is both a physical and mental monster. From now on, you're gonna spend your time between scans looking over your shoulder to see whether or not the monster has come back to torture you again. I'm sorry to be so blunt but that's how my life had been. It helps that I've got a good cancer counselor who has helped me be less negative.
Just because you get the tumor removed and you are cancer free doesn't mean it's over. Remember, the scans are so important and can't be overlooked or ignored! You're fighting a battle for your life now and the scans are your best weapon. That and keeping a positive attitude that it won't beat you.
Don't go it alone. Don't go have the scans by yourself. Family and friend support is good and necessary when your going through this battle. I'm sure they want to be there for you. Please let them. You don't have to all sit around discussing the issue. You will find other ways to entertain yourselves. Go to lunch or a movie or something after getting through the day. It's the best way I know to give some enjoyment after the stress." Alan - Chondrosarcoma of the Spine "You won't get anywhere if you start with one wheel in the ditch"
From Northamptonshire, UK,
Alan, was diagnosed with chondrosarcoma in his Lumbar spine, and treated by the sarcoma Multi-Disciplinary Team at Royal National Orthopaedic Hospital. He had surgery in December 2005. His tumour was quite large, he says, “bigger than a pint of beer!” (remember UK pints are a different size than US pints.) Though having Chondrosarcoma is rare. (An average of 90 patients a year are diagnosed in the UK according to the World Health Organization) Alan has the dubious distinction of having Chondrosarcoma as a second cancer. His first cancer, unrelated to Chondrosarcoma, was in 1982. For that, he received radiation.
After his chondrosarcoma surgery Alan had a routine chest X-ray which showed three 'spots' on one lung. This frightened everyone. A CT scan further revealed, however, that there was nothing to worry about - it was clear. There was much relief all round.
"I mention this occurrence, so that anyone reading might keep in mind the inconsistencies of medical diagnostics. Though frightening at times, keep a level head, and wait until a final consensus. Medical science is not as exact as people might think."
Post surgically, Alan has had to deal with some loss of his previously normal activities. Some muscle from one side of his back was removed with his tumour. And he has been in physiotherapy and hydrotherapy to help with recovery. Alan uses a walking stick which was presented to him by the Minister for Education of the Sudan (not everyone can say THAT). And now, conveniently, he has it to use.
Though Alan has had the previous cancer, and later, he had the Chondrosarcoma, he sure has a reassuring way of giving himself (and others) a morale boost. "It might take a long time to improve - and it may not get back to how it was - but every day is a bonus. It could have been a whole lot worse!"
Raj - Chondrosarcoma Ischium - Misdiagnosis
Barbara's husband, Raj, was told in 2009 he had Chondrosarcoma by some very highly qualified doctors in Los Angeles. It took a series of MRI's, x-rays, CT scans, and a full body bone scan to come to a conclusion on the possible "differential" diagnosis. All the scans were pointing to chondrosarcoma of the ischium (one upper half of his pelvis).
Barbara and and Raj were devastated to realize the ramifications of this. They were told Chemo or radiation would not affect it. What would this all mean for their future? Would he be disabled? If the ischium were surgically removed, how would his body function? Would she have to take care of him at home? How would she be able to keep working? Would their insurance cover everything? Would he ever walk again? Or work? Would he survive? These questions can seem terrifying. Raj and Barbara decided to face every issue head on and make plans to deal with possibilities just in case.
But, even with all their concerns, there is a happy ending. They learned that all the scans had not been quite enough to clarify the diagnosis on their own. Chondrosarcoma is difficult to sort out from other conditions sometimes. It is a slippery character. It is necessary to verify diagnosis by having a biopsy. No matter what the radiologist says it is. The pathologist must further verify it. A biopsy was performed and they awaited the results.
Barbara almost couldn't believe it. She and Raj had the BEST news anyone could EVER receive--the pathology reports (both Cedars-Sinai and City of Hope located in Southern California) said that the lesion in Barb's husband's ischium was a benign bone cyst and NOT chondrosarcoma after all! These types of cysts are typically found in children and teenagers, not in adults. So that was why it might not have been considered as a possible differential diagnosis when first investigating Raj's scans.
Barbara says, "For those who are in the first steps of diagnosis, please understand that it is so important to work with your medical team, to follow through with all testing, to request copies of those scan and biopsy reports, to get a second opinion, and to wait until you find out exactly what is going on before you lose hope. There just might be that small percent of a chance that it is something else.
Still, they took the initiative of seeking out one more (third) opinion and had the biopsy slides sent to another pathology lab just to be sure. It is no insult to the doctors to do so, and they helped to facilitate this. One should not be afraid of hurting a doctor's feelings over getting another opinion. We are all entitled to do so, and it is a wise move. Remember, Chondrosarcoma can be difficult to diagnose even with the experts.
It doesn't always hurt! Rick H - Pelvis, Grade II Surgery 3/2005 Internal Hemipelvectomy
I was diagnosed with chondrosarcoma on my right pelvis on Nov 2004 at the age of 48. I had no symptoms or pain and had remained very active running, skiing, etc. right up to my surgical date.
My chondrosarcoma originated from my right ischium (sitting bone) and progressed very close to my sacrum with a diameter up to 10 cm. about the size of a grapefruit. Of course my bowel, bladder, nerves and other internals had been displaced. Dr. Weiner of Summa Healthcare in Akron. Ohio provided my initial CS diagnosis and was very surprised by my lack of symptoms.
My initial biopsy indicated a low grade (1) chondrosarcoma that has probably been in place for many years. The post surgical biopsy changed the grade to a 2. Subsequent CT scans and MRI's did not detect metastasis prior to the surgery. And 1 year later I am still clear.
My surgery was March 15, 2005 at the Cleveland Clinic with Dr. Kenneth Marks the orthopedic oncologist leading the team. Several other surgical teams were in place to deal with colon and bladder issues which were expected. The complexity of the surgery was more than Summa surgeons were willing to tackle, hence the Cleveland Clinic. A Blessing!
The chondrosarcoma was excised with the removal of my right ischium, pubic bone and 30% of my acetabulum (hip socket) along with my right obturator nerve. The tumor was 4 pounds in mass and turned out to be about the size of a coconut. The surgery took 7 hrs and required 10 units of blood and 21 liters of other fluids to stabilize my losses. The surgeon felt that good margins were obtained in the removal. No prosthesis, mesh, or any other foreign objects were used to repair my pelvic area. I was in the hospital for about 16 days, with the last 5 focused on physical therapy. I understand that some people have shorter recoveries, but It took me about 2 months to begin walking without crutches or a cane.
Many prayers and blessings were bestowed on me due to the fact that NO other surgical complications came into play. My bowel and bladder are ok and functional, and no additional nerve damage was done. Note that, of course, my right side lower abs, hamstring and adduction muscles have been cut and leave me with some bit of disability. Now I walk without assistance and barely a limp and I have maintained a 3 day per week workout at the gym. My cushiony RoHo pillow allows me to sit for a full day in comfort at my computer job.
Susan, Chondrosarcoma Femur
Let me tell you about an online support group for people who have Chondrosarcoma. I was so excited when I found it, I joined immediately. Once my membership was approved by the moderator, and I had access to the group, I stayed up 'til 4 in the morning to read all the previous messages posted by the members. Well not all, but a lot.
Sharon, Chondrosarcoma Skull Base
I'm grateful to be a member of the group. I have followed and read all the postings since my diagnoses and so many have been a help and support to me. Thank you for allowing me to be part of this group.
Peter, Chondrosarcoma of Ribs
Undoubtedly Chondrosarcoma is a scary diagnosis. I was sad, scared and mad in varying degrees for while. But I am so happy that I found this group. I have received wonderful support here.
Ellen, Chondrosarcoma Spine
I cannot fully express my happiness in finding others with Chondrosarcoma. My relief was so great I cried. After all, the doctors had told me that this was such a rare condition I probably would never meet anyone else, who has Chondrosarcoma. That is true where I live. But, you would be amazed to learn how many people with Chondrosarcoma from around the world who participate in this group.
Jacqueline, Pelvis Chondrosarcoma
It’s a great place to share yourself with others facing the same issues. I can't always talk to friends and family about my cancer. But the members of this group, they all know, understand, and care about each other very much. Amazing, isn’t it? I feel like I have a whole bunch of brothers and sisters in a big warm loving family! And cousins, aunts, uncles, you name it.
Richard, Chondrosarcoma of Scapula/Shoulder
As soon as I began participating in the group messages, and getting acquainted, I noticed some common threads that we all seem to experience to one degree or another. I grew to appreciate that here was a group of people just like me, who could understand what I was talking about in relation to my cancer. And now, too, I can help the new members to when they are overwhelmed with their new diagnosis. I no longer feel like the only one in the world who has a different cancer that nobody ever heard of.
Hank, Skull Chondrosarcoma
I really enjoy sharing of thoughts, feelings, and shared wisdom of experiences about Chondrosarcoma and related issues. It is interesting how diverse we all are. It's great to read all the different knowledge people have. I have learned and grown so much from having others with Chondrosarcoma to be in touch with. And there are all these Chondrosarcoma information resource files posted in the site. It would take me forever to search out all those medical articles on the internet, if I did it myself. It helped so much in learning how to communicate with my doctor better, too.
Karen H., Myxoid Chondrosarcoma
Sometimes when I open my email and read through it, I cry. I think it is because I empathize, as in the ever popular, "been there, done that" recognition. Yup, there is somebody out there who knows what it has been like! They are going through the same kinds of things I went through! They understand!! Sometimes I think, “where were all these supportive, wonderful people when I was going through all this?" sniffle!
Alicia, Chondrosarcoma Sternum
It has been such a relief. I don't quite know why. Perhaps I am being unburdened somehow, of feeling like I’ve carried so much of this stuff, alone, (even though I had family members who care). Odd. Isn't it? I'm so glad I found this group, and now I stay on to help others!
Jeff, Chondrosarcoma Pelvis
I read my group emails with a smile on my face and joy in my heart, sometimes, because, we are, able to communicate all things wise and wonderful (and yes, sometimes terrifyingly awful), and we are strangers with strange bones in common that make us strangers, no more.
Nicki, Chondrosarcoma of the Larynx
This group has literally pulled me out of myself. I cry because of the truly awesome way the human spirit can valiantly struggle against the odds, even while feeling devastated, and still hang in there to come out stronger and more beautiful than before. How is it we can't always see it in ourselves 'til someone else points it out to us?
Georgia, Dedifferentiated Pelvis Chondrosarcoma
I am amazed by the family members, loved ones, and caregivers knocking themselves out to help when they might be stressed because of what we are going through. But, there are other family members of Chondrosarcoma patients who are there to give support too. And that means everything to me. I wouldn't not find this kind of support and understanding anywhere else.
Lorenzo, Humerus and Shoulder Chondrosarcoma
It has been rough, but I am still here with a smile on my face and I wouldn’t trade who I am… and what I have been through! I am so incredibly grateful that this Chondrosarcoma support group is here for us to share our common bond. I spent so much time and energy searching for answers, which was often a struggle with many questions. Now, information is more available to me. And, even though I shed a tear here and there, my smiles outweigh them, and it is all worth it to know I have good support and good authentic resources, and help anytime I need it.~~~
There are no known alternative treatments to cure chondrosarcoma. None. If the reader should happen to have substantiated proof of an alternative cure for this rare cancer, please inform the web author.
The most effective method of treating chondrosarcoma to prevent recurrence or possibly create a cure is ablative surgery with clear margins.
However, if you are considering any alternative or complementary treatments, discuss this openly with your cancer care team. Oftentimes they are openminded to the fact that a patient may want to include a complementary method to help recovery. However, just because a friend tells a fantastic story of cure, doesn't mean that it is fact. Arm yourself with knowledge and sort out the facts from the fiction. Request information from the American Cancer Society or the National Cancer Institute. Do as much research through www.pubmed.com where you can to document the usefulness of whatever alternative treatments you may be considering. There is scientific research on complementary treatments. Just because someone writes up a webpage touting a cure with some claims that patients have supposedly made of success, does not give you true medical evidence of the facts.
Ask yourself if you are desperate, or hopeful in regards to attempting such methods. If you are desperate, then please be careful. Don't be gullible. Don't allow your judgement to be swayed by the idea of avoiding surgery, or whatever treatment your physician is suggesting.
Some alternative treatments can be a useful adjunct to a patient receiving traditional treatment. Yet, some alternative treatments can interfere with standard medical treatments or may cause serious side effects. Be well informed about your choices.
These are some of the available complementary choices that some may find useful in enhancing one's general well being.
Hands on Healers
Nutrition and Vitamin Therapy
Traditional Chinese Medicine
Keep in mind that while some treatments which enhance the immune system also feed tumor. Get educated. If you are getting help by seeing a surgeon and believing that this is what you need for treatment, you are trusting science. Please also trust science to find out the facts about alternative or complementary treatments. Go to www.pubmed.com to look up any herbal, nutritional or other type of treatment before accepting the idea that an alternative could cure chondrosarcoma.
Keep in mind that when one has Chondrosarcoma, one can feel in good health compared to people with other kinds of cancer. Don't think that because you feel well, that it is your alternative treatment that it causing it.
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.
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.
If either of those methods wont work for you, call my home phone onlybetween the hours of 12 noon and 9pm Pacific Standard Time. Please respect the times or your call will be ignored.
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