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Many DSRCT patients find themselves coming to the end of traditional medical treatment. They have been through the months of high dose chemotherapy, surgeries, radiation, and possibly a stem cell rescue. The doctors and the CT confirm that there is 'no evidence of disease' and everyone celebrates. Because there is no evidence of disease the doctor goes ahead with plans to remove the central line or port. The patient is finally free of all cancer. But, now there is a whole new set of problems, and that is what this section will address.
To begin with, DSRCT is an aggressive sarcoma that should be treated aggressively. However, once treatment ends there is no way of knowing if the cancer is gone for good. Relapse or reoccurence is extremely high with Desmoplastic Small Round cell tumor. It also appears that DSRCT cancer cells can stay dormant for weeks, months, and years after first line treatment. We have had many reports of the cancer being far more aggressive the second time around. Patients need to be alert that the cancer could come back, and come back with a vengence. This is not to say that some patients who were stage 1 or 2 at diagnosis are not completely disease free. It is hoped that they no longer will be confronted with this disease. But, no one is certain. This section will address how to be prepared JUST IN CASE DSRCT rears its ugly head again.
Hopefully we can address some of the issues of relapse and reoccurence of this highly aggressive sarcoma.