Second Opinion?

Hi Nussi,

I was in exactly the same position as you last year when I was first diagnosed. It seems that someone in the MDT has seen something that has prompted them to ask for a second opinion and I think it is normal and encouraging for a second opinion to be sought if there are any doubts.  This is of course not how I felt last year.  I was just coming to terms with Follicular Thyroid cancer when all was thrown up in the air and another 2 weeks of uncertainty followed.  Bear with your team, they only want to be sure they get the diagnosis right and to then treat you accordingly.

All the best to you.

Swichee

Hi Swichee,

Thanks for your reply - it's good to know it's not just me (in a perverse way - it's not good any of this is happening to any of us).  I have just spoken to the dept. who confirmed it does take about two weeks to get these results back and that the medical team are fully aware of my situation and how upsetting living this 'limbo' life is.  I have an arranged phone call with a specialist nurse on Monday to answer more questions.  I will probably need to post again with more questions etc and experiences.

I have to say the hospital and team are absolutely wonderful  - this has all been very quick - I only went to my GP at the end of Feb with difficulty in clearing my throat (as opposed to having a cough which I had been back several times with and told it was nothing to do with my lungs - even told I had asthma - even though I knew I didn't) - scan followed 2 weeks later, then a first appointment with the ENT team, then FNA and CT scan and my op was on 22nd May - pretty impressive timeline really.

So this is the hardest time really - not knowing whether it's aggressive or not.  I just want to get on with it and get it over and done with.  I know I have to have a TT and also RAI, it's just so frustrating not knowing when?

All the best to you too and thank you.

Nussi

Hey Nussi, 

Sorry to hear of the situation you find yourself at the moment! 

Unfortunately, sometimes the person looking down the microscope finds things they don't expect, or that look a bit funky. So sounds like they've seen some traits that could mean it's more aggressive, but not enough to be sure. It could also be that their lab either doesn't have the piece of equipment they need, or it's broken at the moment. So they've had to send it off to another one who has a working machine that they need.

So try not to stress and worry about it too much, and just focus on your holiday that you have coming up. Relax, spend too much money, eat too much food, and then you'll be ready to face whatever comes next! 

Lass

Xx

Hey Lass,

Thank you for that - you are amazing - have just read your latest post re your recent complications and I do hope you are feeling better. I am blowing hot and cold about this, sometimes I am OK, sometimes I am falling apart mentally - am sure it's the same for everybody.  Its the not knowing what is going on that is the worst - limbo - horrible.

Inhave an arranged phone call with the specialist nurse tomorrow morning to go over what the consultant said, I now know it will be at least Thursday this week before I get any results from the second opinion. So - am living each day as it comes, doing my best to remain calm, and have taken your advice already (spend too much money, each too much food).......I believe 'treats' are the order of the day and try to keep everything as normal as possible.

I am sure I will be posting here again, and will be popping into the forum regularly.

Nussi

Heya, 

It's safe to say I'm kinda miserable at the moment. I basically ended up with internal burns, so the whole right side of my abdomen has swollen up and is really sore and uncomfortable. Hopefully by a week today things should be back to normal, but I'm not holding my breath. Not with my luck. Lol

As for you, sounds like you're reacting perfectly normally to what's going on with you! Lol. Hopefully you won't get used to the limbo as I have, because hopefully you'll have very few times in the waiting zone!

Treats are always in order in cases and times like this! So have at it! Thursday isn't too long to wait, so that's good! And with the call tomorrow, that will hopefully lift some of the worry and anxiety off your mind! Which should then make the wait over the next few days easier too.

Pop in anytime you like and whenever something pops into your head. Someone will always pop in and answer as soon as they can! 

Lass

Xx

Hey Lass,

Oh dear, that sounds really horrible - am so sorry you are having to go through this - thank you for being such a positive force in this forum, I will definitely be backwards and forwards here and although I am sure you have plenty of support already, I do hope that I am able, in some small way,  to reciprocate the support you have given me.

Hoping that you feel lots more recovered and less miserable soon.

Nussi

Hello everyone,

Well I have had the second opinion results back now and today, after a very confusing week where I had a telephone consultation with a junior doctor that just left me with more worry and questions than answers,now I've had an appointment with the consultant to confirm the results. 

I have poorly differentiated follicular cancer, the tumour they removed was 57mm which is fairly large, the stage pT3, and the there is evidence of vasular invasion. 

I am booked for the second operation on 28th August to remove the rest of the thyroid and then follow up with the Radioactive Iodine treatment.  I have met the head and neck cancer specialist macmillan nurse at the hospital and I have now been to look at the iodine suite, so that I could see it's not just a small leadlined box (massive fear of small enclosed spaces).  He said the prognosis is good and that's good enough for me at this stage. 

Its just two weeks since I got the diagnosis and you will all know that your head disappears off to a strange place and it's taken a while to get used to it.  I have also read a lot and talked iwth the Macmillan helpline for support. 

My friends have mostly been amazingly supportive. 

I'll keep  you all updated with progress and probably be asking more questions in the future too.

Wishing you all the best.

Nussi

Hi Nussi,

most important thing is that you now know what you are dealing with and as the professionals tell you that the prognosis is good, very good reason to look ahead optimistically. 

I found the second operation somewhat easier because I knew what was going to happen and I felt my voice was less affected too, so only the waiting again to deal with at the moment. 

Take care of yourself and I am thinking of you.

All the best

Swichee

Heya Nussi, 

Very glad you finally got your results back and were able to get them explained properly and clearly, as well as a plan of action put in place! 

You know where we are, so shout up with questions or just shout to vent anytime! 

Lass

Xx