Desmoid Tumors | A Complete Guide - From a Patient
Hello and welcome to my little corner of the internet!
I was diagnosed at 15, almost 10 years ago, with a desmoid tumour -aka Felicia- in my right thigh. My dx came after months and months of inexplicable pain that would be debilitating, and misdiagnoses. Over the past 10 years, I have amassed quite a lot of informations about desmoid tumours. I was searching videos made by patients on youtube and couldn't find many. Therefore, I decided to make an almost complete and accessible guide to desmoid tumours in hopes of sharing my knowledge and help someone out there. Whether you are newly diagnosed, know a lot about desmoids, or you just want to learn more about a rare disease, I hope this video will be interesting and/or helpful.
If you have any questions or topics you'd like me to talk about, feel free to leave them down in the comments :) Thank you for taking time out of your day to watch my video! I hope to see you again soon, and I hope you have a good one!
0:00 Intro
1:44 What are desmoid tumours?
7:35 Course of action & Nirogacestat
8:42 Watch & Wait
11:30 Surgery
12:01 Chemotherapy
22:55 Cryoablation
25:18 HIFU
25:59 Radiation therapy
28:42 Newly diagnosed: what to expect
34:21 Where to find help
Mary's video about Scanxiety: https://www.youtube.com/watch?v=tBT2DYcYHBM
DTRF: https://dtrf.org/diagnosis-and-treatment/
Nirogacestat: https://www.nejm.org/doi/full/....10.1056/NEJMoa221014
Mayo Clinic: https://www.mayoclinic.org/tes....ts-procedures/radiat
Cleveland Clinic: https://my.clevelandclinic.org..../health/treatments/1
Cancer Research UK: https://www.cancerresearchuk.o....rg/about-cancer/trea
National Cancer Institute: https://www.cancer.gov/pediatr....ic-adult-rare-tumor/
Instagram:
Me - Fibromatosis Girl: https://www.instagram.com/fibromatosis.girl/
Ashley : https://www.instagram.com/chemo_diaries/
Christina: https://www.instagram.com/girlmeetscancer/
Anna: https://www.instagram.com/desm....oid.fibromatosis.gir
Cindi: https://www.instagram.com/cindiop__/
Gabby: https://www.instagram.com/gabbysdesmoidgram/
Hillary: https://www.instagram.com/robotlegmama_hillary/
Sofi: https://www.instagram.com/shrinking_the_silence/
Suzy: https://www.instagram.com/suzylundgren_/
Kate: https://www.instagram.com/kate_chemojournal/
The Cancer Patient: https://www.instagram.com/thecancerpatient/
No Grief Tourists Allowed: https://www.instagram.com/nogrieftouristsallowed/
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