I was diagnosed with Embryonal Rhabdomyosarcoma of the cervix in 2017 when I was 16 years old. During initial testing they also found cancer in half my thyroid which they removed after the Rhabdo treatment was finished. (I'm coming up on 5 years NED this May) We did genetic testing and found the DICER-1 Syndrome, so we also tested both my parents and all 5 of my siblings ... we found out that my dad was the carrier and two of my younger siblings also inherited the syndrome. My dad had thyroid nodules that were mistaken as cancer when he was a teenager, so he had a full thyroidectomy but no malignancies thus far, and he's 45. (He has a really wide array of non-related health issues though) Out of myself and the two siblings that are carriers, thankfully I'm the only one with a malignancy thus far, however all three of us have thyroid nodules that are being monitored. One of the other two had a testicular mass that they are saying I believe was malignant but not enough for treatment?! Just continuous monitoring I guess? And then the other thankfully so far has had nothing, and they're both in their mid-teens. Insanely interesting to think about, and my/my family's case is what's inspiring me to look into going to school for genetic research. I find it fascinating the way it's played out for us , and I wish I could get our extended family tested to find out more lol
I was diagnosed with Embryonal Rhabdomyosarcoma of the cervix in 2017 when I was 16 years old. During initial testing they also found cancer in half my thyroid which they removed after the Rhabdo treatment was finished. (I'm coming up on 5 years NED this May)
We did genetic testing and found the DICER-1 Syndrome, so we also tested both my parents and all 5 of my siblings ... we found out that my dad was the carrier and two of my younger siblings also inherited the syndrome. My dad had thyroid nodules that were mistaken as cancer when he was a teenager, so he had a full thyroidectomy but no malignancies thus far, and he's 45. (He has a really wide array of non-related health issues though)
Out of myself and the two siblings that are carriers, thankfully I'm the only one with a malignancy thus far, however all three of us have thyroid nodules that are being monitored. One of the other two had a testicular mass that they are saying I believe was malignant but not enough for treatment?! Just continuous monitoring I guess? And then the other thankfully so far has had nothing, and they're both in their mid-teens.
Insanely interesting to think about, and my/my family's case is what's inspiring me to look into going to school for genetic research. I find it fascinating the way it's played out for us , and I wish I could get our extended family tested to find out more lol
So few people know anything about this. So glad to have more information via video! Thank you!