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@amyb5

Mine didn’t move to the bones, but was an occult tumor (also known as an unknown primary), that showed up in a ureter, & had blocked, & ultimately killed the kidney. At first it was diagnosed as a rare ureter cancer, stage IV. Then 18 months later showed up as an anorectal squamous cell cancer. I’ve heard “that shouldn’t happen”, “that’s very rare”, even “I don’t believe that” at MD Andersen from the worst dr I’ve seen. It’s very hard to hear those things. I find them unhelpful. In thinking about it, I’ve decided what difference does it make if it’s unusual, rare, or I don’t fit the disease profile. This is where I am, we’re moving forward as best as we can. When it’s said now, I just think “right, I’m unique, lucky me”, & continue on. I guess my point is, I can try to figure out why, but probably never will, so I choose to let that go. I hope that is helpful to you. I’ve learned that all I can do, is reframe my thinking, continue to do what I can to live well, & hope for the best. I hope for the best for you as well.

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If there’s a way to message me directly , would you be willing to share the doctors name . My wife was there the first half of 2022 and she wasn’t happy with her “team head doctor”
Thank you

Hi,

Thanks you sharing. I feel the exact same way. I don't dwell on it but I do wonder what treatment others are doing because no one really seems to know what to do with me. It's hard to do research on the thing that shouldn't happen. 🙂