Hello, I am new here but not new to having NETs. I have almost 30 years of pheochromocytomas and have been under annual surveillance since 1995. Episodes seem to occur around every 10 years with my most recent surgical removal in 2015. My surgeon took a more radical approach to surgery that time and I was hopeful that would be the end of it... But, annual bloods from last year were abnormal (just about on time) and my surgeon suggested a CT scan to investigate further. The can showed an 11mm soft tissue nodule in the same area as all of my previous tumours, and the CT report said th likely cause was recurrent disease.
Which brings me to the MIBG. When my surgeon phoned to tell me the results of the CT scan he said he would request an urgent MRI and MIBG scan to investigate further. The MRI happened within 2 weeks, that was on 26 April. But i am still waiting for someone to contact me to book an appointment for the MIBG scan. I know the MIBG can take longer to arrange because the isotope used isn't always readily available. But how long should it normally take?
I haven't had great experience with timely follow-up in the past. Previously, abnormal blood results went unnoticed/unreported for months and then I was suddenly admitted to hospital to have a series of follow-up scans to make up for lost time. So I am concerned that my appointment could have been overlooked completely.
In the meantime, while I wait to find out what this is, I'm not sure how to feel about it. If it is another pheo I will be devastated that radical intervention was not successful in preventing it from coming back and I will have to deal with further surgery and the frustration that it will likely be back in another 10 years or so. But if its not a pheo, then what is it? Could it actually be worse in terms of treatment and prognosis? Either way I feel like it's not good news, but at least if I had an appointment for the next test I might feel like I was doing *something* about it.
Has anyone else had recent experience with diagnostic tests for NETs? How long was the wait? I have emailed the Nuclear Medicine clinic, but is there any other avenue for following up on the appointment that I should be trying?
Any and all advice/experience shared is welcome, thanks!
Hi SWMango and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like you've been through a lot over the years. I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I hope you don't have too much longer to wait.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
