Transcript of Q&As from our thyroid cancer webinar

At our ‘Meet the Experts’ webinar in January 2023 our expert speakers Prof Dae Kim and Prof Mark Strachan discussed different options for thyroid cancer surgery and how follow-up care is determined. This is a transcript of the patient questions answered live by our experts and chaired by thyroid cancer patient and BTF Chair of Trustees, Nancy Prest.


DK – Dae Kim

NP – Nancy Prest

MS – Mark Strachan

What is the Hemi or Total Thyroidectomy (HoT) trial? Who is suitable to join it? How do you go about joining it? How do you find out more? If my hospital is not doing the HoT trial can I go elsewhere to take part?

The HoT trial is aimed at the majority of the new thyroid cancer diagnoses that we see. So, anyone with a cancer size that is less than 4cm is potentially eligible. Within that there will be some fine adjustment just to make sure there are no high-risk features; maybe a very strong history of aggressive thyroid cancers, maybe in children, maybe there are some features in the pathology once it is removed. So, there are those fine-tuning elements but certainly anyone with less than 4cm should be potentially eligible. So that is the main take-home message.

At the moment we have about 20 sites open around the country, including Scotland. We are hoping to have 30 sites so most patients should have access to a trial site. It may be that the HoT trial is open at your treatment centre but your surgeon is not involved in it for some reason. There is an ethical premise that an NIHR/NHS-funded trial should have equal access. And therefore all patients should at least be told if it is offered within their hospital. If the trial is not taking place in your hospital, potentially you could move to a hospital that does offer it but it would mean that you have to travel and you would have to factor that in.

The HoT trial is a high-quality trial. We want to find, once and for all, an answer to a question that all different nations are asking: ’What is the best treatment for our patient?’ And we do not have the answer at the moment.

For example, we do not have accurate information about what is the recurrent laryngeal nerve palsy rate; or the hypocalcemia rate. You will be told by the surgeon what they think it is. But there has never been a study in which other people have audited a surgeon’s outcomes. It is quite frightening to see what it will be.

Patients will be followed up very rigorously; six-monthly initially, then annually, with blood tests and quality of life questionnaires to find out how they are doing, and what issues they are having. It is all done online, on an app on the phone. Patients will have an ultrasound scan every year for five years.  So patients receive comprehensive follow-up regardless of what arm of the study they have been on.

There are two arms to the study: hemithyroidectomy and total thyroidectomy. When you enter the trial you are randomised to either a hemi or a total so we have equal number of patients at the end to answer this question. This randomisation also eliminates any bias in the study.  And clearly, patients may have their own preferences for what they want but the aim of this study is to get an answer without introducing human bias.

The care that you get, regardless of which trial arm you are on, is comprehensive and the same. The same applies to the follow-up. It is a non-inferiority trial. This means we do not believe that either arm or either treatment is significantly inferior and certainly there should be no difference in recurrence rates. (DK)

Further information about the HoT trial

Lots of the audience are asking about aftercare following total thyroidectomy. How can people get support for side effects of suppressive therapy such as weight changes, fatigue, hair loss etc.?

Well, in my experience, those symptoms are common after a thyroid cancer diagnosis.  What is always difficult to know is whether those symptoms are due to the thyroid having been removed and now being on levothyroxine and maybe the hormone levels are not quite right. Or whether the symptoms are a consequence of all you have had to go through with that cancer diagnosis. Again, I probably do not need to tell anyone who is on this call who has lived through it; it is a horrendous experience. The uncertainty, the worry, the physicality of having gone through a general anaesthetic and operation, the uncertainty about your future and your work. All of these things have a very, very negative effect on our wellbeing.

So, some of the symptoms that people can experience may be a consequence of that. Some of it may be because the hormone replacement is just not quite right; that the levels are not quite right. It may be because we are giving you a dose of thyroid hormone that is actually higher than you have ever been used to before because we are trying to suppress your TSH. So it is a nightmare; it is very, very difficult.

My best advice is: As a general rule,  if you have access to a thyroid cancer nurse then they are probably your best person to contact immediately afterward. They may not be able to help you immediately but they might be able to put you in contact with people that can help you. And that is probably the best thing that you can do. But also have a discussion with the healthcare professionals that are involved with your follow-up. Ask them questions around; ‘What is my TSH level?’ ‘Am I at the right level that you want it to be at?’ and ‘Can we improve that in any way?’

That is probably the best that I can say. (MS)

Do perimenopause and menopause have any effect?

I do not think it has any negative effects in terms of cancer prognosis. But, of course, if you are already feeling rubbish because you are perimenopausal or going through menopause then everything I have just said is amplified further. This is because you are starting off from a baseline where you are not feeling great. So, it is just a further thing that adds to the negative experience that you have to go through. (MS)

The causes for many of the symptoms and the reduced quality of life are not so clear-cut.  I think what is important, and what I would like to emphasise, is that then having a hemithyroidectomy is not your answer. So, until now, most people have had a total thyroidectomy, and radioiodine and so we have built up this database of potential associated symptoms and issues. So you may conclude: I can avoid all of that because I have been given a hemithyroidectomy. That is not the case, we just do not know.

Although the number of people having hemithyroidectomy is increasing,  there are other problems associated with having a hemithyroidectomy: Equally low quality of life, regret, concerns and anxiety.

So, what I want to make sure of is that you do not say immediately, ‘I am going to have a hemithyroidectomy’. That is not the answer. So do not be biased by the potential to have this kind of symptoms just after a total thyroidectomy. (DK)

If somebody has glands or lymph nodes that have thyroid cancer in them, maybe not in all of them, is that classed as metastasised? Or does it mean something else?

Metastasis basically means that the cancer has spread from the primary site. So, classically in the case of papillary thyroid cancer, which of course is the most common, the classic site that it will metastasise to are lymph glands in the neck. Initially, it goes to the lymph glands that are located centrally and then it can also metastasise to lymph glands that are further out in the neck. And that is something that thyroid surgeons like Dae are all over like a rash. In an ideal world, those glands will be removed at the time of the initial operation if possible. (MS)

Technically speaking, it is metastasis because it is spread outside the gland. It is ‘nodal metastasis’ as opposed to the metastasis that we may think of when the cancer has spread to the brain and the lung etc. This is completely different and called as ‘distant metastasis.’

The important thing about thyroid cancers is that they do spread outside the thyroid cancer very early and in most cases. There are lots of studies that show that if you have a 1 or 2cm thyroid cancer, even though the ultrasound and PET scan are clear, if you go looking and remove these glands you will find them in about 50 percent of cases, I am afraid. But we do not think they do anything. They may die if you remove the thyroid, especially if we give you radioiodine. We do not think they do anything. Actually, even when you do not give radioiodine we do not think that this little microscopic spread does anything. So, I think it is a good question but the fundamental care and the treatment outcome take into account all of these factors and much more in providing you with the best recommendation. I hope that helps. (DK)

Are there any supplements, diets to follow or endocrine disrupting chemicals to avoid that can help patients when taking high levels of thyroxine?

That is a difficult thing to answer! I am going to turn that around! If you find as an individual that taking supplements like selenium and magnesium is of benefit to you then there is no problem with doing that. I cannot point you to any high-quality research study where people have been randomised to dummy versus active, that says that taking supplements like that is unequivocally of benefit. But what I can say is that it is highly improbable that taking supplements like that would be harmful in any way. So if there are changes that you have made to your diet, or that you have made in terms of vitamin and supplement regime and have found beneficial then that is absolutely no problem at all. I think that is probably more of an individual voyage of discovery rather than anything that I could say to you that, yes, that will make a difference for you. (MS)

What happens if someone is allergic to thyroxine?

Well, I am not sure I have ever knowingly come across a true allergy to thyroxine. The first thing I would say is that levothyroxine is a natural thyroid hormone. Levothyroxine is made in the thyroid gland. What we take as a levothyroxine tablet is not just pure levothyroxine tablet, it has got preservatives and bulking agents in it. And between different brands of levothyroxine those preservatives and bulking agents will differ. So, it is theoretically possible that someone has an adverse reaction to a tablet constituent. But it would be highly, highly unlikely that it would be an allergy to the levothyroxine molecule. Because before their thyroid gland became hypothyroid their thyroid would have been making thyroxine.

Usually, if someone has a significant intolerance to levothyroxine tablets, some doctors will recommend having a particular branded form of levothyroxine, and that is a trial and error to see whether it makes a difference. Again, personally, I am not a massive fan of that, but I know that that is done by some doctors. And, in other instances, a trial of liothyronine (L-T3)) might be recommended. But that is something that should be discussed, usually, with an endocrinologist in order to determine whether that is the case. (MS)