Hi everyone,
I'm new here and have been coping with papillary thyroid cancer for about a year. I'll try to put a long story short. I was diagnosed with Graves disease around 3 years ago and after 2 years of meds it was decided a more permanent option was needed and I opted for TT. About a month later, I received a phone call from the Oncology department telling me I needed an appointment to see if any further treatment was needed... I hadn't even been told I had cancer. Turned out a multidisciplinary meeting had happened and before my ENT surgeon could let me know oncology was busy rushing ahead and I found out over the phone whilst at work. 4 spots on thyroid was found to be cancerous. After dealing with all that I agreed to have RAI and appointment made for December last year. Appointment then got cancelled due to staffing levels and then had to get moved to a hospital 2 hours from me to have RAI. Had full body scan which showed a lymph node had taken up some RAI. Fast forward to today, after being told I need a fine needle biopsy a month ago and getting worked up for it, had an ultrasound done and guy said I didn't need biopsy. Best thing was he didn't even know I'd had a body scan or why I needed another ultrasound so had to explain but nothing was showing on my records at his end. It felt like he didn't believe me when I said I'd been told the lymph node had taken RAI. I basically told him I wanted the biopsy to get a definitive answer but he said no because the lymph node hadn't changed since the last ultrasound and quoting him if there was anything bad it would have changed.
I'm currently under 3 different hospitals for my thyroid, 1 for ENT, 1 for oncology and 1 for endocrinology, none of which use the same systems or talk to each other properly. I'm getting so frustrated with waiting around for them to talk to each other and having appointments cancelled because they haven't. I feel like everything has been messed up ever since I found out about the cancer and I don't feel listened to. I've been patient and as understanding as possible as I know there are people worse off than me but now I'm just getting fed up of it all. I don't understand why I cant be under 1 hospital for everything which would keep so many things much easier. I keep trying to ring the nurses but they never answer and I just want to tell them all to bugger off and leave me be. Sorry for the long one but needed to get it off my chest.
