I have been reading [in Sciscoop about the] new cancer drug called avastin. I have a synovial sarcoma, a cancerous tumor in my right foot. I have been told that if I have the cancer cut out, I would lose all use of my foot, because of the location of this tumor. I went to a podiatrist and had the tumor removed a year ago. It was the size of a golf ball. It was totally encapsulated and growing out of the muscle. Now the tumor has come back, still encapsulated. I have went through ct scans, x-rays, and mri’s. So far it isn’t anywhere else. This cancer is known to spread to the lungs, and lymph nodes. In one week I am scheduled to have my foot amputated March 31st. If you think or know of anything being used on this type of cancer please let me know. It would be greatly appreciated. I really don’t want to do without my foot.
First off, let me say I am not a medical doctor. Your current caregiver’s recommendation about amputating your foot may unfortunately be the best course of action to save your life. Choosing not to follow this recommendation and pursuing some other experimental course of action you’ve read about entails some big, big personal risks.
Having said that, there are other courses of action besides amputation you may wish to consider. The National Cancer Institute says about synovial sarcoma that “…Because synovial sarcoma is such a rare type of cancer, both adults and children with this disease are encouraged to consider joining a clinical trial (research study with people).”
Clinical trials are the way modern medical science advances and new drugs and treatments are developed. However, there are several things to remember about clinical trials. They primarily exist to gather scientific data for the good of society in general; they do not generally exist to help any individual in particular. There is no guarantee whatsoever that an experimental procedure will treat your affliction any better than existing treatments or indeed have any beneficial effect at all. Also, many clinical trials involve only half of the participants receiving an experimental treatment, with the other half receiving no treatment at all for comparison purposes. Thus participating in a clinical trial might very well allow your affliction to worsen because it is receiving no effective treatment at all.
If you are interested in participating in such studies, here are several lists of ongoing clinical trials which may be of interest to you. Cancer.gov lists 31 clinical studies underway for treating soft tissue sarcomas in general and ClinicalTrials.gov has an even bigger list of 109 clinical studies underway for treating soft tissue sarcomas in general, along with a shorter list of 14 clinical studies underway for treating synovial sarcoma in particular. Note that the ClinicalTrials.gov lists have a button called “Map of locations” that you can click to find those studies that are closest to you.
You are obviously in a difficult time in your life, and I wish you well in your struggle. Whatever happens, consider participating in a group like Sarcoma Alliance. Two of my cousins have suffered from breast cancer, one fatally and one still fighting it. They both believed it very important not to let their cancer spread to their smile. Reaching out to those who understand and share your tribulations can help. Good luck.
I am glad to see your question here because it means you are being proactive in your own treatment. You are in good hands – your own! Not to say that you shouldn’t listen to your doc – but your doc should listen to you, too (or dump her and get a new one!) and if you continue to research and learn everything you can about your situation, you can work together with your doc to find the best course of action. Best of luck with whatever you decide to do.
My two favorite medical-oriented quotes: