Hi I have papillary thyroid cancer, diagnosed 2016 with lymph nodes mets and then lung mets diagnosed 2021 (but possibly there since 2017 just too tiny to see). I've had 2 RAIs, unknown if the last one worked my scans are stable, tiny nodules in lungs, no reoccurrence in neck, thyroglobulin under ten but fluctuating. Recently identified as being RET positive. Happy to answer any questions you have as I know it's a rare cancer and can be very lonely x

Thanks so much for responding.  Can I send full response tomorrow - feeling tired.  

Hey MungoSlugsieScoot, Lucie is right I am currently dealing with follicular variant of papillary thyroid cancer, have had Radio iodine treatment as was a positive margin with lymphovascular space invasion, currently waiting for the results which were supposed to be on the 10th April but have been moved to the 2nd may for some reason which is horrible.

I have currently just lost my voice with no sore throat and have been having achy pains in left side neck so rang consultant oncologist secretary to inform for advice.

What stage in the process are you in? Any questions ask away I'll do my best to answer from my experience so far

hi Trinitytrace

thank you so much for your reply. I’m sorry to hear of your cancer  and the delay in your follow up.  Sooo frustrating for you.  Your symptoms are very different t to mine but I hope they can be dealt with soon.

I have both differentiated and poorly differentiated papillary (follicular variant) thyroid cancer.  Diagnosed after a cranioplasty to remove what was, at the time, thought to be a large benign brain tumour in 2022.  This turned out to be differentiated follicular variant papillary thyroid cancer.  Went on to have a total thyroidectomy in which they found poorly differentiated thyroid cancer, which is so rare NICE and Butterfly Thyroid Cancer, and other thyroid websites don’t mention it!I have lung and bone mets but no lymph involvement, as far as we know.  I was diagnosed at stage 4.  I’m on TSH suppression only, my oncologist (whom I don’t like and am trying to change) having decided RAI has not worked (having second opinion next month).  He has withdrawn RAI and switched me to watch wait and see until I start to deteriorate when he’s going to offer me Lenvatinib.  Currently have thyroglobulin levels of around 113, which is rising, but I have dropping thyroglobulin antibodies (9, down from 15…).  Onco has only just now sent my tumour off for genomics…

I'm trying to find out if Lenvatinib is tolerable and if  it’s felt to be worth trying.  The way my oncologist has talked about it is very off putting.  Sounds worse than chemo with no hope of cure I’m not sure I want take something that will keep me alive but trash my quality of life with little hope of returning to a good quality of life….but I may be misinterpreting this…

The confusing thing is that, as far as they can tell I only have two tiny/small active tumours, 1 in my lung and one in my rib (6mm and 2.5cm) which are very slow growing (2mm a year).  I have asked if the two small tumours can’t be zapped with ERBT or surgery but been told I will never be offered surgery! I do have further lung nodules but they are dormant at present.  

The only symptoms I have had recently are fatigue ambushes, am more prone to chest infections and I’m struggling more with arthritis and musculoskeletal problems!!!  But I’m still working, exercising and getting out and about….

Im putting on weight like there’s tomorrow, which I’m finding very frustrating!

Oh my I'm so sorry you going through this. That is alot your dealing with. Can I ask why can't you have surgery to remove the lung met?

I am also gaining weight sooo much, I am either sooo tired or can't actually sleep which is annoying as I'm still working.

Hi mungo  I had a similar situation last year with my oncologist when my last RAI didn't light up on my scan they decided I was possibly refractory to it. They discussed Lenvatinib with me and the side effects did sound terrifying, I had a really dark time for the first time in 7 years with thyroid cancer and did a lot of research.  Some good points I learned that really helped me were I met a lot of people who are on Lenvatinib and have been for years and stable,  yes the side effects can be tough but they do calm down in most people.  The fact that this drug was not available 5 years ago is also huge, because new drugs are coming out fast for thyroid cancer.  You are getting genetic testing which is SO important! Mine at the end of last year showed RET mutation which opened up so many more drug options, so if you get a mutation back that could really help. Sit down and talk to your oncologist,  I had a full chat with mine about how I was feeling and he talked me through it, ultimately when you go onto any kind of drug or treatment is your decision and not there's, its your body and your choice, if you feel healthy then it's not the time. My other suggestion is look at a private referral and see if you can find the best thyroid cancer oncologist who specialises in advanced thyca.  I know it's scary and I know getting used to levothyroxine and the weight, fatigue is so difficult but you will get to a good place. After last year I thought I wouldn't but I'm training for a marathon right and now and trying for a baby, living with cancer isn't like it use to be, it's more like living with a chronic disease. How much levo are you both on? Xx

Hi there,  thanks for your reply,

I asked for surgery and my oncologist (who has labelled me as a “stressed and anxious patient!!!”) says I will never be brought in for surgery but would not say why- I’m guessing it is because of the lung nodules which are in both lung bases. But this is why I’m asking for a second opinion (have appointment next month at a hospital in London with someone who helped me write an article for the British Thyroid Foundation and who works quite a lot with them…)

I also asked about ERBT for my rib as I don’t understand why that is not an option, except that neither of these are mentioned in Nice guidance…but that’s all they are, guidelines.  Some clinicians hide behind Nice guidelines to avoid doing things they could otherwise try, I feel…

I hear you about the fatigue and sleep problems.  I’ve just thrown off, after 6 weeks a chest infection which completely drained me.  I’m considering giving up work as have been advised to make the most of the next 6-12 months before they start me on Lenvatinib….

Do you mind me asking how old you are? And how quickly is your thyroglobulin going up? Your oncologist sounds a bit useless to be honest! I know plenty of people working while taking lenvatinib 

Thank you so much for your reply.  Really helpful info about Lenvatinib and advice.  I wish I could sit down with my oncologist but we really don’t get on.  He’s more slippery than a politician with is replies and keeps telling me to “be chill” or be “patient”!  He’s pegged me as “stressed and anxious”.  I have asked to be moved to another onco as I really don’t feel supported.  His attitude se s to be that I’m lucky to have had the treatment I’ve already had and should be grateful.  Hopefully I’ll get further with the other Onco.

 I’m so glad you are in a so much better place.  I’m on quite high doses of thyroxine 150mg a day, which I think is contributing to the fatigue.  I’m finding that I get ambushed with fatigue at around 11am, 3pm between 4-6pm and feel ready for bed at about 7pm.  However, if I eat a whole meal with meat and two veg, I rally and can keep going til 10pm etc.  am trying to think of foods high in protein that I can graze on to reduce the crashes.  I’m also trying to follow my specialist onco physio’s advice to “earn” my rest and do 5x1/2 hour cardio or strength training sessions a week.  Am struggling to do this but I think it is helping with my stamina.  

Am thinking of getting myself medically retired but I’m an nhs employee and the NHS has messed up my pension!!!  You couldn’t make it up!!!  All my healthcare team want me to stop working but we can’t afford all the nice things on my bucket list without a second income!!!