Thyroid Cancer

Oh my goodness that is alot without the support of your consultant. Do you have an oncology nurse? If not get their numbers today they have direct access to your consultant M -Fri and have been their before with so many people so can help with questions. Did they check your calcium levels? As that can give you tingling so please say to your consultant. Ask today what steps they plan (RAI), ask for support they should be giving you a pile of leaflets e.g. Macmillan cancer thyroid cancer booklet ( you can also download on line) or the butterfly trust contact details. I think we all go through that stage of shock then oh shit I have cancer, it's perfectly normal. I'm here if you ever need to chat. I had the remainder of my thyroid removed on Thursday with a level 6 neck dissecti ( the first half removed with the tumour in January) feeling a little sorry for myself today ,. I see my consultant in 2 weeks to talk levo levels, and hopefully find out when my Rai date is.

Good luck today, you've totally got this xx

Hi Dizzymum

Thankyou for such a supportive response.   Met with my consultant this morning and he has answered my questions around my surgery.     I'm now being referred to Endocrine Consultant and them my Radioactive Iodine treatment will be planned in approx 3 months.  He said any cancer in my lungs or anywhere else will be killed off.  I will also have various scans etc.

It all sounds very positive but I still feel apprehensive.  maybe it me overreacting.  I did call into the MacMillan support centre at the hospital and now have lots of information of help I can avail off.   My husband came with me today and is feeling very positive.  It's making me feel guilty for being apprehensive. 

I'm sorry to hear you had to go through surgery a second time.  You are very brave and we are allowed to feel compassion for ourselves also.  

I totally understand that being a mum everybody is OK as long as you are.  If not it all falls apart.  Just another little pressure on us. Please know you really sent me a ray of sunshine and hope this morning.  For that I'm truely grateful. 

I'm here when you need that ray of sunshine reflected back or if you need to chat about what others might see as silly but we don't. 

 Prettyflower



Brilliant I'm glad you got all your questions answered earlier. We are both at the same stage waiting on RAI and more scans. Is the Rai all done in endocrine or are you referred for another reason? My apt should be in two weeks with my consultant. 

I completely get you at the start all I could think about was stages, advancement, survival you name it. I now am just taking each day as it comes and I know the odds are on our side so we just need to grit our teeth and get on with it. My tumour ( Tabitha was 5*4*2cm) so large and way past the 1 cm don't worry stage.I get the guilty feeling but it's totally fine to feel however you want to feel, no one cancer journey is the same nor is any day. Also you've been told you have the C bomb and no matter how you read it, say it or think about it, it does bring the unknown and can bring any array of emotion with it.

Your doing fab, I hope you where able to get your oncology nurse phone numbers because anytime you want to ask them anything they will be their. I couldn't praise my oncology nurses enough they truly are fab. 

Massive hugs and so glad today went well xx

Morning

Hope you are feeling a little better today.  I have an appointment on 18th March with the Endocrine doctor.  My consultant said I should have a date for RAI in next three months.  This will give my body time to recover from surgery etc.  

I was telling him I feel so tired, hair falling out and such dry skin and he told me I should be bouncing around as my levo levels are a little high and he reduced them from 125mg to 100mg per day now. We will see if I stop bouncing around with energy . He did say my levels will change until they get it right.  Still early days. 

I called into the MacMillan centre at my hospital and the girl there was so helpful and supportive.  Gave me lots of information about classes on fatigue and some gently exercise classes and complimentary therapy.  I def going to sign up for those as I do think they would be a great positive in this journey and a way I can help myself.  Take a bit of control back. 

Taking it easy today as going to hosp and also calling into work with my sick line yesterday takes the energy out of me a little bit.  

I'm still going to do something positive today.  Its a goal I set myself.  Even if it's just clearing out one of those draws that's seems to be full with all those important things I need but never ok at . 

Have the best day you can today. Lots of hugs.  I'm here if you need me. 

PF

Wow my levo is 150mg where you getting palpations on the higher dose? I feel grand no hair problem's and a little bit of tiredness but 100%thats my chest infection or recovery from the surgery. I know alot of people have discussed hair products to help and hair masks seem to be the go too. 

Good luck for the 18th and let me know how it goes. My only APTS this week is staples being removed on Thursday which isn't too bad. Completely get doing little things at the start is tiring I'm posting my sick line I couldn't face the pity looks or stares at my scar until it heals a little.

That's brilliant your so upbeat, exercise classes and complementary therapy sounds perfect for chilling and taking your cancer journey by the hand.  it!

Aw loving your one positive goal a day, I will try this from tomorrow it's sounds like a real positive approach.pms. we all have those draws I think I have one in every room in the house

I went back to work after my first surgery to get back in the right head space but I'm not sure what I plan this time before RAI my doc wouldn't agree to my 3 week sick leave so now it says 8 weeks tbh I kinda knew 3 weeks would be pushing it but 8 weeks seems forever. How long are you off for?

Best thing this week is my best friend from school days has flown over to help with the kids and it's just lovely to not worry about stuff. Massive hugs glad you rested today definitely sounds like a good balance xx

Morning

Oh your best friend visiting sounds just what you need. I've just reduced my levo from yesterday to 100mg from my starting dose 125mg.  Consultant said I was sensitive to it.  ii surpose I need to give it time.  I've just put my second line into work but I plan to be off for at least 6 months.  I was really ill for over a year going from one consultant to another in painnd having horrendous migraines being physically sick nearly everyday.  It was only when I had an upper back scan for my neck a tumor was found.  No one joined the dots but I kept telling everyone I  wasnt feeling well.  I think they were starting to think I was crazy  and here I am.  Total TT and lymph node removal and a spread  to my lungs.  I stayed at work until the week before my surgery and just decided this is my time to get be healthier and the best I can hope for with the Cancer. Hopefully the RAI will get it all. I have had to arrange my consultants appointments and MRIs up until the Cancer diagnosis privately and it was just by chance it was found.  I would still be so ill.  I know it's hard to believe but I'm in a better place now than I have been for well over a year.  I now know what I'm fighting.  Just need to get the right battle tactics on place.

Take goid care of yourself and enjoy your friend coming to stay. 

Lots of hugs and love being sent your way.  

PF

Heya Prettyflower,

First off, welcome to the forum, though I'm sorry you need to be here!

I'm glad you got to see your consultant and that they were able to answer all of your questions, that's always a good thing - having a consultant you can chat to. Now, there were a few things that came up I wanted to touch on...... let me scroll through and see what they were, cause my memory is horrific today! lol

Oh yes....

So, not all hospitals have specialist nurses for all cancers . We quite often have folks popping in who haven't been assigned one because their hospitals just don't have the funds for them. Thyroid cancer is statistically classed as a rare cancer, so having a specialist thyroid nurse just isn't cost effective for lots of places unfortunately.

Also, different hospitals will have different people managing patients care, depending on who has what skills and interests. So some people will be managed by their ENT surgeon, some might have an oncologist, and some might have an endocrinologist. Some might even have a combination looking after them, as at my hospital you are seen by an oncologist until your cancer is gone, and then you're passed over to an endocrinologist to be followed up and monitored. Though for me as I'm incurable, I see both of them roughly once a year each just to make sure everything is ticking along and my TG is behaving itself.

Thyroxine is partly based on your size and makeup, so how tall and wide you are, as well as what is muscle and what is fat. So you'll find people on all sorts of doses here. For example, I'm on a dose of 225 a day, because I'm a big ol' blob! lol

Fingers crossed the RAI does it's thing for both of you, and you know where we are if you need to shout for anything!

Lass

xx

Hi Lass 

Thankyou for your support.  I'm still so confused over my blood tests.  I will get them tomorrow again from my surgery and post them on our chat.  I just don't feel great at all and certainly not bocing about according to my consultant  I'm sure he's only trying to be nice but I feel very fraigile emotionally and just want to be listened too.  I'm going to give my nurses a call tomorrow as I can't remember everything from my app Monday.  Brain not working either.

Lots of hugs and love

PF

More than happy to explain blood tests if you'd like. Can even give you a layman's explanation as to how it's all working in your body if you'd like? Just let me know.

Remind me, have you had a TT? If so, do you know what your TSH suppression level is that they're aiming for? Is it the standard 0.1?

Lass

Xx

Hi Lass 

These were my blood results last Friday. 

TSH. 0.04

T4.32.5

T3 5.2.

I would really appreciate your help understanding what's going on please. 

PFxx