Newly Diagnosed Papillary Thyroid Cancer

Hi cyclist 95

I was

Hi cyclist 95 sorry about the attempted reply but my phone is playing up  am so sorry to hear about your diagnosis  as I am going through the same thing 

I found it better to talk to my friends and family as they gave me lots of support  I had a full thyroidectomy and it hasn't been easy but you will get through it , I've had no pain even after the op I'm still receiving treatment  4 months on I'm about to go for radiodene  treatment next month  ,are you having partial removal or a full thyroidectomy  but as I said it's good to talk  I wish you well 

Thanks for your response Red scouse and really sorry to hear you are going through the same. How did you feel when first told the news? Does it become easier to understand? 

I am due to have a full thyroidectomy plus lymph node removal and then also RAI treatment. Is that 4 months post surgery that you are just starting the RAI or is this a second lot? I am wishing you well too, and glad to hear you’ve not had any pain.

Hi cyclist 95 

Yeah must admit I had a little cry I'm a 60 Yr old man but quickly adjusted so my treatment has been 4 months post op with a lot of waiting around time  but I've quite enjoyed the time off with the grand kids but you will be fine  ill let you know how I get on with the RAI treatment  I wish you well and best of luck with your op  let me know how you are  

1. Hi Cyclist95, 

Essay incoming! 

Fortunately it does get easier over time, I am 25, male, and similar to you otherwise fit and healthy. I was diagnosed with papillary thyroid cancer on the 7th of March after an initial Ultrasound and Ultrasound Guided FNA earlier this year. 

I had a hemithyroidectomy on the 22nd and in terms of post op strain / pain, I am pretty much back to normal already in less than a week, the discomfort started to subside after 2/3 days - so don’t worry too much about the actual procedure, I’ve been told I’m unlikely to need RAI and I am still waiting, but have been told as I’ve only had half out - there’s only a 20% chance I will need thyroxine - so I couldn’t tell you anything about that side of things unfortunately at this stage, but I will find out in about a months time!

I am fortunate enough to have a better half who has been with me every step of the way after being diagnosed, I would really stress not to bottle up any feelings you have over the diagnosis and if you can, talk to someone. My girlfriend has drilled into me that absolutely everything we’re feeling is completely normal - the  sadness, anger, disbelief, worry - it’s all normal and just us going through the motions as any human would when confronted with the C word, especially at a younger age, unexpectedly, like us both. After the diagnosis, I probably cried at some stage or another through out the day or night for a week straight, but I’m feeling better and more positive now after the surgery. 

Aside from immediate family (parents, siblings)  my partner and 3 very close friends, I haven’t broadcast my diagnosis to my colleagues, family, or generally to other friends  - the thought of constant messages in the lead up to a surgery was anxiety inducing and I’m glad I decided to go down this route. Now that I’m almost on the other side however, I’ll soon be open to sharing the news 

I am currently waiting for my histology results, (1 more week to go!) & similar to you have at times somewhat spiralled in terms of thoughts here -

“What if it’s spread somewhere else before removal?”

“What if it spread to my thyroid from another location which is also not showing any symptoms / undiagnosed?”

After some reassurance from the consultant today, I’m trying to put these negative thoughts to the back of my mind - we’re, in some way -  the lucky ones.

As you said, PTC is typically slow growing, and not likely to spread. One consultant even put it to me that if they had to choose any type of cancer, it would be this one. 

But I completely sympathise with you, knowing the positives doesn’t just immediately stop all of the negative and intrusive thoughts.

Me and my partner have just been trying to work with what positive information we’ve got at each stage, as you’d imagine, she finds it’s easier to see the positives but I’ve been trying!

1. Highly Treatable, typically a Good Prognosis / outcome

2. Slow Growing and Very Unlikely to have spread, the consultant told me of patients who had PTC for 5+ years without knowing and the outcome has still been positive. 

3. Once removed / treated, you are more than likely to more or less be back to life as normal.

Wishing you the best with your treatment, more than happy to answer any questions you have, and just remember- absolutely every single emotion you are feeling is completely normal, but generally as treatment goes on - things will feel better! 

I think that is totally normal reaction of course! Im sorry to hear you are having long periods of waiting but glad to hear you are making the most of it, I’m sure your grandchildren will be very appreciative. Please do let me know how it goes yes, as I don’t know what to expect myself. I ended up telling my team at work about my situation because I felt a huge weight hanging over me all day that was making it worse. I cried while trying to tell them which felt immensely embarrassing and personal but ultimately I feel it was the right thing for me to do because I only felt relief after and as if I was able to then get on with my working day without having to pretend that everything is fine. I am very lucky that they are kind and understanding, and I have a supportive workplace. 

I hope your treatment comes soon, do let me know how you are getting on. 

Hi CH9, thanks for your message. I have to say that the thing that was most helpful was hearing that you have had some very similar thoughts to me, particularly “What if it spread to my thyroid from another location which is also not showing any symptoms / undiagnosed?” because this is a fear I’m finding keeps coming up. It’s good to know someone else can relate.

I am glad to hear you have a good support network in those that you’ve chosen to share your news with. I am not very good at hiding my feelings as I wear my heart on my sleeve consistently, so for me personally I found sharing my news today with my colleagues was actually the best choice for me and allowed me to actually get some work done which provided much needed distraction and relief from stress. Who’d have thunk that I’d be going to work to escape stress?! Anyway I overall feel I had a good day today. Now comes the hard part of this weekend when I have to share the news with my siblings while also trying to celebrate dad’s birthday… I have been waiting until I could see them in person to tell them as they also are quite emotionally charged people, with one of my siblings living much further away. So I hope the fact that I have been putting it off doesn’t backfire. Wish me luck…

Hey Cyclist,

I have Follicular Variant Papillary thyroid cancer.

Originally after symptoms started with other stuff, Graves disease was picked up in 2022 November,December had a sore throat, January had a ultrasound followed by an FNAC, MDT meets after MDT meeting they did another FNAC which came back something else, referred to surgeon for August 11th, had total thyroidectomy September 15th, got told November 21st was FVPTC, had RIA in Feb 14th and scan on 23rd, still waiting on results, had appointment on 11th April but they have changed to 1st may which as you can imagine is soooo annoying.

As you I have bad thoughts like is this a good thing or is it bad? 

As I had a positive margin I'm constantly thinking these achy pains I get are something, and then I lost my voice with no sore throat, so consultant I rang well his secretary and he doesn't think I should worry and I prob have an infection, turns out I had chest infection after antibiotics has came back straight away, always have something these days so mind is working sooo overtime.

I haven't accepted I have cancer yet I don't think as it just seems so unreal and the waiting is like what? Constantly thinking of the worst...

I've kept working throughout this all just had 3 weeks off after surgery as I needed to for my job as I'm a domiciliary carer. I do find it a great distraction though, I've told everyone about my diagnosis and I'm strong so I can deal just my thoughts eeeee are bad some days.

Hope your well x

Also forgot to say, I have a Total due to me having Graves disease as there is a possibility down the line they would have had to take it all, so I said take it now and I'm just switched meds to other meds...

I'll let you know if that was a good idea when I think it was. But it's hard to tell as meds need to be high until I'm all clear so any side affects arnt what I'll feel when I'm normal should I say lol 

Plus they prob would have done it anyway as it was a positive margin with lymphovascular space invasion...

Nothings ever easy eyyy