June 10, 2002
My Sarcoma Journey or I Have What?
When I was diagnosed with Liposarcoma 14 years ago in August 1987, my first reaction was ?What is that?. I immediately went to the library to discover more about this unusual disease already knowing it meant I had CANCER! Not only did I not find out much about Liposarcoma there was very little about Sarcomas in general. Since I did not want to go into treatment unaware of what the best treatment was, I continued to research. As sometimes happens fate stepped in and I saw an article in the newspaper about a researcher who did investigations on any kind of disease but mostly for cancer. I contacted her and found out what I could which was a lot of pages of information and the realization that there was not much in the way of treatment for this rare disease. There are only about 8500 cases of Sarcomas diagnosed world wide in a year and there are many variations of Sarcomas. By this time I had been x-rayed, scanned, had a biopsy and sent from my internist to an oncologist and on to an oncology surgeon. It was my good fortune to arrive at the U. of Iowa Cancer Center and be treated by an excellent surgeon. Often Sarcomas are not recognized or misdiagnosed and treatment delayed until there is no longer any good treatment possible. I had surgery and removal of a 4 and half pound tumor about the size of a football. Then I received radiation with care taken to not damage the rest of my internal organs. There is no other treatment available for low- grade tumors like mine and even with high grade little in the way of chemotherapy or any therapy was available and not much research being done because of the rarity of the disease. There are a few more options now fourteen years later. It is difficult to be noticed when there are so few patients. We will never know if the radiation did any good as I had a very big recurrence in three years. So I went back to the surgeon and had removal of tumors, left kidney, spleen, and tail of pancreas. A very big surgery but recovery went well and I had a long period of remission. It was over 6 years before it was back to the surgeon again. This time a grapefruit size tumor was removed from in front of the right kidney and some smaller ones and some intestine. This really seemed endless and it is. I have been told with the location of the tumors and number of recurrences I will not be cured.
At this time I happened to see another newspaper article, it was about someone with the same disease as I have. Do wonders never cease! I never expected to meet anyone else with a sarcoma let alone someone who lived close to me. I called her and was invited to join a wonderful group of people on the internet who had formed a support group. One problem-I had no experience with a computer. Didn't even know how to turn one on. My husband soon remedied that. But I am a slow learner with machines. Our marriage survived and I joined the Sarcoma Support Group on ACOR (Association of Cancer Online Resources) What a blessing this group has been to my life. These are people who know about the disease and a place to share information, resources, coping skills and even a joke or two. When things get to rough humor may to a good way to lighten the load and raise some spirits. After awhile I joined another group with my type of Sarcoma which is liposarcoma as I mentioned before. Soon I became the listowner or manager of that group. Another great experience because I was now talking to people with different kinds of sarcomas on one list and those with my kind on another. On thing led to another and I became one of three listowners of the Sarcoma group. Well don't stop now, I thought, because others wanted to talk to those with their type of sarcomas too.
ACOR already had a very large list for Leiomyosarcoma and the one for Liposarcomas, one for Ewings but more were needed. A member of the Sarcoma list wanted to start a list for Rhabdomyosarcoma so that was started as Rhabdo Kids. Then those with Osteosarcoma wanted a list of their own as well. Since these two forms occur most often in children it has become a place where parents can discuss all areas of treatment for their children and coping skills as well. There are some adults with these two forms and they join in and share a lot too. All of these lists have many survivors which gives some hope to those who continue to fight this disease which we call the dragon!
Sarcomas do need more research and more specialists in this disease. One of the things we tell our members, when they first join, is to go to a Sarcoma Center if at all possible and send them the list of specialty centers. These centers will do evaluations if the patient is not able to stay there for treatment although that is what is encouraged of course. I feel joining the ACOR lists has helped me and many others to find the right treatment while talking to others with this rare form of cancer. I did decide to make some changes in my own treatment and now go to MDAnderson Cancer Center and the Sarcoma clinic there. My most recent surgery was at MDAnderson in Feb. 2001. While this is a long way from home for me, I live in Illinois; it is where I feel I need to be. I will continue this journey and helping others through the ACOR services for as long as possible!!
ACOR listowner-Sarcoma-Liposarcoma-Rhabdo Kids-Osteosarcoma
Sarcoma For Life-My Sarcoma Journey Continues