Shocked

Hey Carl,

Just joined today and spotted your post I have no insight because I've half out and half to go but just wanted to say we have the same kind ( diagnosed begining Dec) and mines is a little bigger at 5*4*2 mines graded at a T3 because of the size. Have you had anymore results or did they do a neck dissection with the second op? Hope your second surgery went well and your RAI date is soon- I'm super jealous you've already had your second surgery.

Hoping you get good results soon x

Heya

Welcome to the forum, though I'm sorry you find yourself here!

I just wanted to pop in and say that the PTN system really doesn't mean a lot to most people, and isn't often used in general chatting as it doesn't really change the treatment. Also, giving things a T then a number can get confusing, as that's the grading system used for the FNAs. lol. They really didn't think these things through fully when they were shortening them and making them up!

How are you doing with everything? Are you def getting the other half removed, as they don't always take it?

Lass

xx

Hey Lass,

Seen how many fab posts you have put in TC group and I totally have loved reading all your insights. How are you at the moment? I found the TNM grading confusing at the start  it 'sas well but its what my consultant is using. I suppose if my T3 had an n1 whatever on the end it would make less confusing ( but thankfully none of the other letters have been found so far). Next surgery and neck dissection ( I've been told they will take more lymph nodes) is in a few weeks with the RAI to follow. I'm doing ok, tough with one under one and a toddler. Definitely just like the next few months to hurry up so I can have the full body scan with RAI to check for hotspots and get back to my little ones.  Mum guilt between not picking up the baby after the ops and stopping bf for RAI has definitely hit.  

Hi Dizzymum, I hope you are ok, I am recovering ok from my second op ,it hadn’t  gone into the otherside and didn’t go into my lymph nodes,I have an appointment with oncologist in March to book the rai 

Cheers

Carl

Hi Carl,that's brilliant news that yours hasn't spread. You have given me hope that mine could end  up contained too. They just keep taking dodgy lymph nodes out but thankfully they've all biopsied ok so far. Hope you're recovering well from the second op and good luck for March.

D

Thank you,it’s vascular invasive so hoping it hasn’t spread to further places but hopefully I should find out soon enough 

Heya Dizzy, 

I'm not great at the minute tbh, healthwise, but doing what I can to keep going. And more than likely doing more than I should. Lol. I agreed to make my friend's wedding cake, so I have a tasting for one of them arranged for tomorrow. So today I've made 3 and a bit mango and coconut cakes, and some mango and passionfruit jam. Tomorrow I need to make an orange and mango drizzle, a coconut caramel, and 3 or 4 different types of icing. So they can pair the icings and fillings with all the cakes and work out what they want this one to be. Then I need to do the same with a chocolate and nut one, and then the same again with a marbled summer Berry cake too.

And yeh, the consultants are interested in the ptn ratings as it tells them what they need to know nice and quickly. But I know that, at least personally, I like the words more. Means I don't have to think so hard! Lmao!

You're getting a neck dissection with a follicular diagnosis? Did they find something in your lymph nodes in the first op? Have you read my posts about recovery after neck dissections, or do you want some info on that? 

Very glad you've been told you need your milk to dry up before RAI. That sometimes slips through the cracks!

Lass

Xx

Fingers crossed your pre RAI scan doesn't show other hot spots. Have they already given you a chest scan?

Hey Lass,

Sorry to hear your not keeping well at the minute but wow you have a lot on! Flip baking wedding cakes with different flavour combinations you are one brave lady I wouldn't attempt that full health let alone with the big C. Well done you! And they totally sound yummy! I completely want cake now.  

Yea no clue why he's doing a neck dissection he just updated us last week to say other half of thyroid and a neck dissection as he wants to go through my lymph nodes check for anything. They've already removed one lymph node with other side because it looked wrong however biopsied ok. Though they have done more dye testing and scans of my neck and chest since the first surgery to check for spread so perhaps that's made him decide to take more lymph nodes I didn't ask and just said take whatever you think needs taken as I'm not precious. Yes please some info on neck dissection recovery would be fab. 

Hmm I'm still now thinking about coconut and jam . Hope you get all your baking done for the tasting xx

So, Coconut and Lime cake is now in the oven and once that comes out then I'm done for the day. Def can't manage anything else physically, though the cats are telling me that their poo palaces need changed, and those things are HEAVY! So that's going to be fun. Might do two tonight and the third tomorrow. Lol

So, neck dissection...... 

I'm sorry to say that the average recovery time is about 6 months rather than the couple of weeks it takes to recover from a lobectomy. Depending on which nodes they plan on removing, the scar may also head up the side of your neck and towards your ear rather than the one just across the front of your neck.

They try to avoid your tendons and nerves, but sometimes these can get bruised which can leave you with numbness in odd places on your face, head, arm, chest, and it can also give you restricted movement in the arm beside the dissection. I've no idea why it isn't standard practise, but after things have knitted together securely - so a couple of weeks to a month after your op - speak to your GP and ask them for physio exercises to help you maintain full neck, arm, and shoulder movement. Also ask them to show you how to give yourself a massage to help keep things loose. This is because as things heal, you don't want them to heal tightly or for the scar tissue to be too firm. The massage and physio exercises should hopefully stop any problems in the future. Are you OK taking Ibuprofen? If so, you'll want to take it for a while after the op to help you keep that flexibility.

This does mean that lifting your kids will be a problem for longer, as in don't do it. Same with if you drive, you won't be safe to drive until you can turn to look into your blind spot. 

So, it does sound a bit doom and gloom, and I'm sorry for that. But I'm very much a believer of forewarned is forearmed. So you can prepare and hopefully get sorted sooner rather than later, and avoid any real issues! 

BTW, back to cake, lol. Have you heard of mug cakes? You mix ingredients in a mug, bung it in the microwave, and then you've got cake for one in under 10 mins! 

Lass

Xx