Thyroid cancer and conservative management

[Bamboo36]

Hi, I had half my thyroid removed in September and the results came back at papillary cancer. I’ve been told to consider myself cancer free as it was contained in right thyroid. However, two hospitals (East Surrey and Royal Marsden) have recommend having remaining thyroid removed followed by radiation iodine treatment. I’ve done a lot of research and feel this is quite extreme given survival rates are similar if you retain half. When I asked I was told that the UK approach is different to US. I can’t help but feel that some of this is commercial (the US want to make money through monitoring and the UK save money by not having to monitor). Any thoughts on the differing stand points?

I’m told that full removal will mean that they can be sure in their monitoring that the cancer has gone. However, I can’t help but think that if you’re given regular ultrasound and then remove if required that is as good. And I may manage years on my own thyroid. As a result. Has anyone experienced conservative management?

I’m terrified of being on thyroid medication and the possible implications on fatigue, mood, depression. How realistic is this fear? Drs tell me that most people are fine but my research suggests that isn’t really the case.

I’m seriously considering conservative management as no one can really quantify this is a bigger risk? Am I risking my health by going down that route? It really doesn’t seem to be black and white.

Thank you in advance

[Nanaedake]

I've had half my thyroid removed. A lot of factors influence decisions. Less than 1cm tumour and no spread, I was told, is considered low risk. Contact Butterfly Thyroid Cancer Trust for useful information. I'm happy with conservative treatment and am no longer on suppressive dose of Levothyroxine. This seems to be the new thinking. However, you may need Levothyroxine if your thyroid fails to produce enough hormone, either way.

You'll need to discuss the factors that inform the decision making process. It's different for each person.

[Bamboo36 in reply to Nanaedake]

Thank you so much for the Butterfly Trust recommendation.

My tumour is a little bigger (2cm for one and under 1cm for the other). But the British Thyroid Guidelines on the trust page have been incredibly useful and have helped to confirm my thinking is in the right direction. It’s ultimately a new emerging approach to use conservative management and there are no guarantees. It does give me a useful framework to discuss with the doctors as it shows that 2-4cm are a personal decision to weigh up the risk/benefits. My hospital guideline is to operate on anything over 1cm so very different to this. Thank you and I hope you stay well!

[MaisieGray]

It is contradictory to stack up all the possible negative prospects of being hypothyroid and ignore the lifetime associated costs of treatment/testing/associated health conditions arising from that, yet accuse the NHS of wanting to remove the other half of your thyroid in order to save costs. There's no guarantee that over time the remaining half of your thyroid will or won't be equal to the task of keeping you euthyroid; nor that if you have a second surgery, that your life as a hypothyroid person will be dire. Many people happily and healthily benefit from exogenous thyroid hormones and find it surprising that those who, by definition, populate groups such as this, aren't similarly well. I was perfectly fine for 30 yrs until the menopause stepped in, and then good again once Liothyronine was added to my Levothyroxine. Speaking for me, and me alone, I wouldn't play wait and see with cancer, as there are incidences of differing cancers in both sides of my family.

[Bamboo36 in reply to MaisieGray]

Thanks for your views, I’m only basing the resources bit on what one of the leading Thyroid cancer experts in Scotland has said in his research papers. He talks about the challenge of access to resources when taking into account the new way of thinking. The bottom line is medication and blood tests are a lot cheaper than regular scans. I totally understand the need to manage money so I’m not judging, I just want to be aware of all factors that influence a recommendation. I certainly don’t want to mess with cancer, hence my agonising over the decision and trying to research through many sources.

Thank you for sharing your hypothyroid experience - it helps to know some people are ok. My fear is I’ve recently been on the wrong side of the odds for a number of health things so I want to explore all options available before doing something that can’t be reversed

[Bamboo36]

Hi both, just wanted to say thank you again. The reading helped lots. I had my appointment this week and was able to ask everything I needed. The surgeon helped me to understand my specific risk factors and I’ve decided to have the other half removed. So it happens in January and hopefully I can get onto the right medication levels. Very scary for me but I know I have to do it.