Beginning the Chondrosarcoma Journey

Beginning the Chondrosarcoma Journey

Monday

Is support available for Chondrosarcoma patients?

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.


See: www.chondrosarcoma-support.org

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.

No comments: