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The Treatment Plan for My Son with DSRCT

This is what I remember about that first consultation with Dr. Reed. Mathew
and all the parents, along with Dr. Reed and I believe his nurse may have been there, all crowded into a small office.

Dr. Reed passed around a copy of the chemo protocol for Ewing Sarcoma, which is what was also used for DSRCT. He explained that once they started hammering on the tumor they needed to keep the treatments close in order to keep the cancer on the run.

My previous knowledge, based on personal experiences with family and friends and everything I had ever heard about cancer was this:
You found a lump, a tumor etc. You either had the tumor removed and received more chemo or radiation for good measure. Or you received chemo and if the tumor completely went away, you were done. Cured!!!

Not so with sarcomas. Even if the tumor completely disappears with chemo, you are not cured. You keep receiving chemo. There are some other options. I read about an intra-abdominal chemo wash, but that is if they open you up, remove a small tumor and they do the wash to kill any stray cancer cells.

So when Dr. Reed said they will give 12 weeks of chemo, do another scan and if the tumor has shrunk, they will remove it.

I asked the question: “What happens if you can’t do surgery?”

Dr. Reed’s response was “then he receives chemo until he can’t anymore.”

I don’t know if anyone else in the room heard that answer or even my question. They may have been processing their own thoughts and impressions. And I did hear what Dr. Reed told me, but I didn’t really understand it until later.


“He receives chemo until he can’t anymore.”

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