3 years post diagnosis - curve ball

Hi safcfi85

It's always unnerving when something you weren't expecting happens and it sounds like you don't believe the reason you've been given for the extra ultrasounds. 

As no one here has come forward with any similar experience, it would probably be a good idea to speak to your CNS so that she can go through the reasoning behind the ultrasounds with you. I'm sure your team would be happy to explain their decision making and would want you to fully understand why it's been recommended.

x

Hello

This is probably just routine for your particular oncologist. Different hospitals do things differently, but if your Tg is still undetectable, it's unlikely that there's anything to worry about. Personally, I've only ever had one ultrasound and even then, I only got it because I asked for it and the ultrasonographic couldn't get his head around what he was supposed to be looking at. Protocols vary. If it was worth worrying about, they wouldn't make you wait all that time - perhaps the hospital is doing these instead of follow up radioactive ioding scans.

latchbrook it's worth being aware that very few TC patients - at least in the UK - actually get a CNS,especially if their case looks pretty straightforward. Most of us are lucky to see a doc once a year and many won't get the same person twice in a row. It's rather different from the more common cancers. 

barbaral

Hi Barbara and I hope you're doing okay.

Thanks for the heads up regarding a CNS not normally being assigned to thyroid cancer patients. I guess I just assumed, dangerous I know, that as all other cancer patients get a CNS then thyroid cancer patients would get one too. Who do you have to ask questions of if you have any worries or concerns?

x

That depends a lot on the hospital and whether you're private of NHS. In the first year to two years, people see a doc or surgeon more often but after that, it declines quite quickly.  IF I had a serious concern, and nobody here could answer it, I'd probably advise people to contact Butterfly Thyroid Cancer Trust in Newcastle. I wouldn't advise bothering with the 'ask a nurse' service here as - unless a lot has changed in the past two to three years - they were only ever able to answer pretty basic questions that members could already help with.
Thyroid cancer patients don't get the level of support that's expected by many of the more frequently occurring cancers. 

barbaral

Hi Barbara

After your comment about not bothering with the Macmillan 'ask a nurse' option because they can only answer basic questions I've checked with admin to see if this is the case for people with thyroid cancer. The answer I got was as follows:

"Our Cancer Information Nurses have a huge range of experience and the majority of them have specialised in a cancer type. 

They are all qualified to be answering questions about any cancer type, though they try to get the nurse with the most relevant experience to answer. In addition, every single answer is checked by a Senior Nurse before it's allowed to be posted on the site.

However, if someone is looking for a specific answer sometimes the nurses aren't able to give this. This is usually because they do not have access to medical records and cannot give information which is specific to that individual's medical need as they do not have the whole picture and it could be dangerous - for example, different drug interactions etc. Therefore, they will then refer the person back to their medical team if they need any further specific information."

Kind regards

x

Thanks Barbara, I’m not sure what I was panicking about, I think it just caught me off guard, is gone in pretty relaxed as I’d already had my blood test results from the GP so I knew they were fine.  I really need to be better at dealing with the anxiety around these appointments, if anyone has any tips let me know! Xx