Getting a second opinion before second dose of RAI

Hello

Could I ask which country you are living in, please? Getting a second opinion is likely to be a different process in different countries. 

Hello Barbara,

Thanks for getting back to me, I’m in the UK. 

One of the problems with getting second opinions in the UK is that, unless you are with one of the major London or big city hospitals, there may simply not be enough 'experts' at your hospital to get a second opinion. In my location - east Midlands - there were only two thyroid surgeons in the region and both would be on the MDT discussing each person's case. I only know of one oncologist dealing with RAI. 

If you were with the Marsden in London, Christies in Manchester or the big cancer hospital in Newcastle (forgive me, can't recall the name), there might well be more specialists to choose from.

I have only met one person in 10 years who told her hospital she wasn't happy with their care, went to the PALS (patient liaison service) at her hospital and demanded a referral to the Marsden. She definitely did the right thing but it takes balls to do it.  I know others who probably should have asked but didn't, possibly for being too politely British.

I would recommend to speak to The Butterfly Thyroid Cancer Trust. The woman who runs that will give you good advice and - if necessary - advocate for you to get what you need. 

For me, the question around your second round of RAI might be whether you need the lump surgically removed before they zap you with the iodine. That probably depends how big your new lump is and whether it's the only one.

Here second opinions can be given without the reviewing doctor seeing the patient.  They need the same information that the MDT is using to guide treatment.

This might be an option if there aren't many local experts.  Another option might be asking your MDT to consult with external experts.  This can often get national, and even international, experts looking at your case.

Thanks for your reply

Hello Barbara,

Thanks for your detailed reply.

I'm in London and I've actually just been recommended another consultant at a different hospital to try and get a second opinion from by someone who's been through something similar. It's not that I'm unhappy with my care as such (my surgeon and main Head & Neck cancer team were/are amazing), but the radiotherapy doctor saying it was "unsurprising" to find more cancer after they led me to believe the first RAI was just a 'formality' really to kill any remaining thyroid cells.

It does feel a little 'risky' to request a second opinion, as I don't want to cause upset but I do want to make sure that the second dose is both necessary and will work. I'm not keen to keep coming back for more! They've said that surgery on this one isn't an option due to the location and I think its quite small (but they gave the caveat that there could be more!). I really just want more information on whats best in my case before any next steps.

Will definitely contact The Butterfly Trust - thanks!

All the best,

Fiona

Hi Fiona

If there's another lump and it's been confirmed as cancer, then the next dose of RAI is pretty much guaranteed to be necessary.

However, nobody - no matter how brilliant a surgeon or oncologist - can guarantee it's going to work. But we can guarantee that if you don't have it, it won't work (if you see what I mean).

The question that I would ask - if you don't mind me suggesting it - is how big is that lump and does it need to be cut out before the follow up RAI?

When I was first diagnosed, I was determined to be absolutely lovely and make my doctors adore me but if I'd not been convinced they were doing what was right for me, and were explaining it fully, I would have kicked up a fuss.

As for offending a doctor, this is quite literally your neck on the line. Don't let politeness be your enemy. 

Hi Barbara,

Thank you so much for your replies, its been really informative and helpful.

I got confirmation this morning that my GP has referred me for a second opinion to another hospital. As you say it's likely they'll recommend the same but at least I'll feel that I made an effort to get as much information as possible and I will definitely ask about the size of the lump and if it should be removed first! My current Consultant Oncologist/RAI Doctor said (via my clinical nurse) that it couldn't be because of where it's located but that seems a little strange, but maybe as they have already removed lymph nodes from that same area (??), I don't know but will ask.

All the best,

Fiona

That's all good news, Fiona.

I was lucky that my case was one where I didn't have to make any decisions - the lump was so big that, even though they didn't know if it was cancer, it had to come out. Once it was confirmed as cancer, the size meant RAI was compulsory. So at each stage where I might have had to decide, I didn't need to.

If I had, I'm sure I'd have wanted to be confident I was doing the right thing. So well done on asking for what you needed.

Hi Barbara,

I hope all is well with you.

I got a second opinion from a different hospital and its very different to my Oncologist and surgeon. They wouldn't do RAI first (possibly but not until after surgery) and felt that Watch & Wait was a reasonable option in my case. He said his first step would be surgery, which could be difficult but not impossible but that there was no rush as long as everything was monitored/scanned regularly.

However I had a longer more detailed appointment with my Oncologist after that who feels that I really shouldn't wait to have the second dose of RAI (based on their MDT meeting, my original diagnosis and histology) and that surgery due to the location of the lump (its currently just over 11mm and behind my collar bone) would be very difficult, my surgeon agreed with this.

So I'm in the position where I need to make a decision quickly, I've been putting it off for weeks now, but I'm now totally confused!