After two years of active treatment for my aggressive desmoid tumour, I finally feel like things are back on track and that there’s more going for me than just hope, I have consistent scan results that show shrinkage each time. The tumour hasn’t grown since the end of 2016 and things are looking promising that it will stay that way for the near future at least.
When the tumour first started growing fast and aggressively, it was pressing against my urethra and almost blocking my kidneys. Luckily I got stents put in just in time, and have had them replaced every 6 months for two years now. The stents don’t cause me any pain, but since having them I’ve regularly gotten UTI infections. I got this recent scan to see whether the tumour had stopped pressing against the urethra so that I can have the stents removed for good. Things look good, but my oncologist needs to confirm with the urologist. Hopefully when I go in to have the current stents removed in September, I won’t have to come out with fresh ones. This is a milestone I’ve been focusing on for a while so even having a conversation about the possibility of removing them is happiness to my ears.
Then there’s the far away milestone and question that’s regularly on my mind, when can I stop treatment and see what happens? It’s not going to be anytime soon and I’m realistic about that, but I asked at my appointment today and with further shrinkage my oncologist would consider moving me to monthly treatments (currently fortnightly) for a bit before looking at stopping treatment to see what happens.
Most importantly, my hair is back in its element. Now looking 90% like a bob and 10% like weird chemo regrowth, I feel so much more like myself and am amazed (and shocked, even) that it has grown back because I had moments where I believed it was gone for good.
I’ve come out of the scariest time with this desmoid tumour, had some FAP (familial adenomatous polyposis) related scares along the way, and can now feel hopeful that the years ahead will see me move out of regular treatment/disease scares, and into monitoring of my desmoid tumour and FAP related growths in my pancreas, duodenum and stomach.
But nothing is ever certain with rare disease, so for now I’ll just celebrate the wins that are right in front of me and take each day as it comes.