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| Kenneth Courtney |
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Posted:10/27/2005 1:24 PM |
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Hello Everyone:
My daughter was diagnosed two months ago with a Wilm's Tumor in her left kidney. The stage III tumor was originally found to be a 'favorable' histology. The tumor was found ruptured, and two of three surrounding lymph glands were metastasized (found to be cancerous). Since then, she was placed on the appropriate chemo therapy protocol for stage III Wilm's, which is now in it's fifth generation.
Two weeks ago, we were informed that Natalie's tumor may have been a Rhabdoid tumor, and were not given any details until a full week later. On Wednesday of last week, we received a call from Natalie's oncologist letting us know that she did in fact have a rhabdoid tumor, and would need to check into the hospital the next day.
She was admitted on Thursday last week, and given every test known. She was placed on an inpatient, very aggressive chemo-therapy which has pulled every last bit of strength out of her, and requires her to take eight separate medications a day (as I guess most of you are already aware).
The good news: after two months from the surgery since the initial discovery, no new tumors have been found. Natalie's oncologist made it very clear that didn't necessarily mean anything, that this kind of cancer has a way of sneaking up on people, but the news that no new tumors were discovered was very encouraging, and at least let Natalie's mother & breath a momentary sigh of relief.
-Kenneth S. Courtney
http://aciasoftware.com
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| jared's mom |
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Posted:10/27/2005 10:15 PM |
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Hi: 2 months out without recurrance is a very good start. I was always told by my doctors, the further out without recurrance or new tumors, the better the chances are of staying cancer-free.
Personally, I would be very upset over the mis-diagnosis. Over the last several years, more pathologists have been able to diagnose ATRTs properly. I usally never give my opion on these matters, but I think you should question the doctors as to how and why it was not known to be a rhabdoid in the first place and why when they finally suspected Rhabdoid it took 2 weeks to confirm it. Especially because now she is going to start another chemo protocol they could have started 2 months. You also may want to consider having the original tumor sent out for a second opinion, just to be sure. If you are interested I am sure there are many of us who can suggest pathologists that we trust. you are your child's best advocate and have the right to know why this mistake happened.
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