Metastatic Papillary Thyroid Cancer

Hello

Sorry that you've had such bad news.

I haven't been through the metastatic problems that you describe but my neighbour's friend had this a couple of years before I got my thyroid cancer (11 years ago now). As far as I know, that woman is still chugging along. Another friend who was diagnosed not so long before me is also still fighting on. 

I think the important thing to remember is that there's a massive difference between not being cured and being dead.

Sorry to put it so bluntly but they are very different. Many people will live a long and relatively normal life WITH thyroid cancer without it ever being cured but equally without it actually killing them.  So 5% chance of being cured isn't the same as 95% chance of being dead.  There's a great big spectrum of possibilities between.

So long as the RAI keeps on working, and the pharmaceutical industry comes up with ways to keep it working, you should be able to live well even if you can't ever entirely get rid of it.

I definitely suggest contacting The Butterfly Thyroid Cancer Trust - http://www.butterfly.org.uk/ - as the lady who runs that is excellent at advising on more complex cases of TC.  She's also always up to date on what's happening in terms of trials and new medication. 

Hey, I actually found out about my thyroid cancer on Friday when they did a biopsy of the mass on my sacrum. I’d not even paid any attention to what are now clearly symptoms I’d been experiencing.

The biopsy came back that it was a secondary and now waiting on a ultrasound and FNA on my neck. They have seen the mass on the thyroid on a CT scan. 
I’m hopeful it’s a very treatable type and as Barbara says they can manage if not cure. 
I just wanted to be connected as this is all so new. Sending some care and support. 

I’m so sorry to hear this. But at Barbara brilliantly points out, many many people live with ThyCa for their whole long lives. I have a poorly differentiated thyroid cancer with bone mets, including one in my sacrum. I was diagnosed in 2017. I’ve had three rounds of RAI and aM now on a drug called Lenvatinib as RAI stopped being effective. Im still doing well. No new areas since I was first diagnosed and chugging on with daily life. More than happy to chat or share experiences but in many cases, even metastatic thyroid cancer isn’t a death sentence. Hope you’re being treated at a major cancer centre with experience of more complex cases. Best wishes Fiona

Fiona, a BIG thank you from me for what you posted. When I post, I can only talk about other people I know. What you bring is real 'lived experience' of having a full life with thyroid cancer.  I'm sure it's not easy and you must have worrying times, but every year the treatment options seem to improve.
Wishing you all the best and hoping you'll be posting here to reassure people for many years to come. 

How are you getting on?