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
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 He has withdrawn RAI and switched me to watch wait and see until I start to deteriorate when he’s going to offer me Lenvatinib.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!
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
I’m 58 years old. Started with Tg of 83.9 has fluctuated between 69 and 176ng/L.Lastest measurement was 113ng/L Never been below 69ng/L. We were aiming for less than 40….but that has not happened. Tg antibody: fluctuating between 11iu/L and 15Iu/L - had RAI uptake in rib and lung but lung nodules shown up on CT with contrast.
