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Fiona2020's CancerCompass Friends

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About Fiona2020

Bladder Cancer, Lung Cancer - Adenocarcinoma
Side Effects, Chemotherapy, Cancer Nutrition, Supplements

In Oct 2017 I was healthy 60 yo when diagnosed with Urachal Cancer for which I had partial cystectomy and en bloc removal of urachas / navel and nodes at MD Anderson Houston TX (MDA). Despite clear follow ups through
Aug 2019, I am now with multiple lung mets. We start up to 6 rounds of combo gemcitabine, 5FU/Leucovorin and cisplatin, (5 days tx w 2 weeks off) at MDA early 2020.

Why was no prophylactic chemo offered at surgery? Why are chest CTs not standard follow up (instead of only Chest XR)? MDA Surgeon and oncologist said clear margins/nodes indicate best prognosis but others on this site with similar surgery also developed mets. How can we advocate to avoid mets? Since there will never be large numbers or interest in our cancer, how can we advocate for translation of findings from cancers similar to our rare UC, into our treatment?

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