Update on my sarcoma

[Ms. Toad]

I'm now 2 years NED (No evidence of disease). That means my risk of metastatic cancer is low enough that I only need CT scans/X-rays every 6 months (instead of every 3 months).

I've gone from an indeterminate prognosis (somewhere between 50% and 80% survival at 5 years - not enough similar cases to be more specific) to a 97% survival rate at 5 years (based on tumor type, lack of local recurrence, size and grade of tumor, and number of months since the initial surgery).

Yay!

My breast cancer risk is also quite manageable. There's a 4% chance of local recurrence (based on additional genetic testing). So 7 years out I'm back to routine annual mammograms, with no additional treatment or screening.

Double yay!

And - just in case you haven't seen the meme going around about scanxiety:

People often don't realize there is a difference between general anxiety and scanxiety. For those of us with scanxiety, it's not about what might happen. It's about what did happen. It's not so much about worrying as it is about remembering.

Doctors find my concern about small risks perplexing. Although (thankfully) I don't have scanxiety, my worry about what seems to them to be minimal risks isn't irrational worry about what might happen - it is very much about remembering all of the minuscule risks which have materialized for my daughter and I. My daughter's diagnosis at age 4 with an adult disease. Her subsequent diagnosis with a very rare disease. My own diagnosis with a rare cancer (1% of all cancers is a sarcoma, and within that there are 50-100 sub-types).