This transcript was extracted from the ‘Living with thyroid cancer‘ video.

Hi everyone, I’m Soraya and I am the head and neck cancer clinical nurse specialist for the Northern trust. My support worker, Kerrie, who some of you will have spoken to on the phone is also here today. Give us a wave Kerri. So we work together to support all of you through your thyroid cancer journey. So today is really an opportunity for me to give you some information on living well with or after thyroid cancer.

Some of the topics I’m going to be chatting through with you today include the role of the head and neck cancer nurse specialist, so my role, the various journeys that people have been on through diagnosis and treatment, and also a little bit about follow up and a discussion around symptoms and side effects of treatment and how to manage these. It’s important to say that finishing treatment is a huge milestone, but it can also be a confusing time. Many people expect to feel back to normal quite quickly, but this is often not the case.

For thyroid cancer in particular, follow up can often last many years. Some people in this room may be on other forms of longer term treatment, with a view to controlling persistent disease, and their care may be more focused on supporting them with symptoms and helping them to maintain their quality of life as much as possible. So it’s very common to have uncertainty about blood tests and scans, to have emotional ups and downs and questions about the future.

So today is really about understanding what follow up looks like, how we support you long term, and how to live well. It’s really important to acknowledge that you might have mixed emotions during this time, such as relief, fear, uncertainty and this is all very, very normal. First of all, what is my role as your nurse specialist? So hopefully I’ll have met all of you at some point during your cancer journey.

I know you’ll have met so many different people at various points during your journey so far. A clinical nurse specialist is also sometimes known as a CNS or a key worker, and a key worker is a key point of contact throughout your cancer journey. And this person might have changed at various points as you have moved through the pathway or been cared for in the Belfast Trust.

While I know some of you might have met Sophie, who’s our oncology thyroid cancer nurse specialist in the City Hospital, whereas my role is more embedded with the surgical team in the Northern Trust. But we work closely together to support you, to support your family, and if you have any questions, concerns or worries regarding your cancer diagnosis or its impact, we are always at the end of the phone, and I would really encourage you to reach out if you ever do need a bit of extra support.

So a CNS or a key worker has an understanding of the medical side of your condition, but also a good awareness of the impact it may have on your daily life. We are therefore well placed to act as an advocate for you within the wider team, and to ensure that your wishes and priorities are well understood. We aim to provide you and your family, friends and carers with information and support as you move through the cancer pathway.

We can help with things like symptom management, emotional support and explaining the results of tests, so blood tests, scans and advising you on appointments and things like that. And we all work very closely with the wider multidisciplinary team so that includes oncologists, our surgeons, our endocrinologists and our fantastic allied health professionals, some of whom will be here with us later and you’ll hear from them too. And then we also make referrals onto other professionals and support services as required to ensure that you, as an individual, receive the specific support that you need.

So many people refer to a cancer diagnosis and treatment as a journey, and I’ve used that term a couple of times here today already, and everyone will have a very different story to tell about their journey so far. What we do know is that thyroid cancer can affect everyone very differently, and that’s both physically and emotionally. Some of you may have been diagnosed after investigations for a different health condition showed an incidental lump in your thyroid. Oftentimes, these people have no symptoms telling them that there is anything wrong, as Doctor Abdullah has alluded to.

Some of you may have noticed a lump in your neck that prompted you to go to your doctor, and others might have had a different experience altogether that led to their diagnosis. People here today may be cured after their surgery, with or without radioactive iodine. Others may be on long term surveillance only. Some people may be living with stable disease and others may have recurrent disease.

It’s important to know that many people live long, full lives after thyroid cancer. Care is focused on monitoring, well-being and quality of life. Support continues for you even when your treatment has finished and your CNS or key worker remains part of your team throughout your follow up, no matter what your circumstances are.

So what does follow up look like in thyroid cancer? Well, it is normally long term for a minimum of five years and it is tailored to each individual. So it could include things such as regular blood tests, so things like obviously your thyroid function, for some people we test for certain tumour markers. We do ultrasound scans, so normally just the one ultrasound scan around 6 to 12 months post-surgery and then only additional imaging if there are any new symptoms or concerns. And you will be seen at least yearly for an in-person clinic review with either your consultant or with myself in the nurse-led Thyroid cancer follow-up clinic, and this will include a thorough neck examination.

For people that have had radioactive iodine treatment or other oncology treatments, your follow-up will normally be shared with our oncology colleagues in Belfast, and they may request additional scans depending on their own protocols. Follow up also includes open access to advice between hospital appointments via either myself or our ENT secretaries. The purpose of follow-up is, of course, to monitor for disease recurrence or progression, it’s also to ensure that thyroid hormone levels are correct for you, and we use follow-up to manage late effects, to manage any symptoms you might have, and also to provide reassurance to you and your family and answer any questions that you might have.

So I’m just going to touch on these thyroid bloods. I’m not going to get too technical on this, but chances are all of you will be having bloods at regular time points. So in the context of thyroid cancer, blood tests do help us to do a number of things. And again, which bloods you have will depend very much on the treatment that you’ve had.

So all of you will have likely had your thyroid function tests monitored at some point. And in those who have had a lobectomy, so one half of the thyroid removed only, it can be helpful to test these to identify whether the remaining residual thyroid lobe is effectively producing enough thyroxine, which is the hormone that is naturally made by your thyroid gland that supports normal bodily functions such as your metabolism, your heart rate, your digestion, things like that.

In other people so those who might have had a total thyroidectomy, plus or minus radioactive iodine. We use thyroid function tests to make sure that you are on the correct dose of levothyroxine, which is the synthetic or man-made version of the thyroxine hormone. Then for those of you that have had the whole thyroid removed, you will also be having regular thyroglobulin checks and that’s a protein that is produced by both non-cancerous and cancerous thyroid cells. We therefore monitor this in people that have had the full thyroid removed, a total thyroidectomy, as it sometimes can give us an early warning of a recurrence of cancer. However, all of that being said, it’s really important to remember that while the numbers do matter, your symptoms also matter as well.

We use blood tests to help guide treatment decisions and reduce unnecessary scans, but they can still understandably cause some anxiety. It’s really important to remember that changes in blood results do not always mean that the cancer has returned. With thyroglobulin in particular, we like to look at results over time and identify trends, rather than just looking at a blood test in isolation.

It is just as important to tell us how you are feeling and whether your symptoms have changed.

So many of you in this room today might be on thyroid replacement therapy or levothyroxine. And as you will likely know, this is normally a lifelong treatment. It is used to replace your natural thyroid hormone when you are unable to make enough of this yourself after thyroid surgery. We sometimes use this at higher doses to suppress your TSH, your thyroid stimulating hormone levels after radioactive iodine treatment. It’s important to remember to take your medication first thing in the morning, at least 30 minutes before your breakfast or any other medications.

So whilst levothyroxine is an amazing drug, we do know that it is never quite as good as your own thyroid hormone, so side effects can be quite common. The analogy that Gillian, who a lot of you will know, one of our ENT consultants uses is, taking away someone’s natural ability to make their own thyroxine and giving them levothyroxine is like taking out a Duracell battery and putting in a battery from Poundland. It’s never quite as good. You can also experience some of the same symptoms that someone who was on levothyroxine may experience, even if you have just had a surgery and you don’t require levothyroxine therapy and that can happen because your body is adjusting to a new normal after thyroid surgery.

So these symptoms will probably be things that are familiar to most, if not all of you, and can include fatigue, heat or cold sensitivity, weight changes and brain fog. These symptoms are extremely common and they can be very difficult to manage for most people. Some symptoms can be long term, and so much of our treatment involves helping people to learn to live with them through supportive measures and referrals to other services, such as our charitable partners, many of whom are here today.

Fatigue in particular, as I’m sure most of you will know, is experienced by the vast majority of people. So I’m delighted that we do have our occupational therapist who’s coming later to discuss this in more detail, so I won’t labour that point too much. We do also closely monitor your bloods and adjust doses of levothyroxine as needed, and this can sometimes help with some symptoms.

Finding and adjusting to the correct dose of levothyroxine for each person can take time, and it’s important to remember that everyone is different, and what works for one person might not work for another. Other long term effects that some people can have that may be directly related to surgery include voice changes, swallowing discomfort, neck tightness or numbness, and calcium balance issues.

If you do have any symptoms or side effects that you are finding challenging, then please do reach out and ask for help. We know that any symptoms can be extremely distressing for people, and obviously they can impact your day to day life both physically and emotionally. I know that people can sometimes be reluctant to seek advice, maybe because they feel that nothing can be done or it’s an embarrassing topic.

But the main thing to remember is that you can always reach out to a member of your health care team for help, and the early reporting of symptoms can help us to identify ways in which to manage these and to improve your quality of life.

So following a thyroid cancer diagnosis and the subsequent treatment, and then potentially living with thyroid cancer, we know that oftentimes emotional recovery can take longer than physical recovery. Many people experience scan related anxiety, fear of recurrence or progression of their disease, frustration with the nature of long term follow-up, feeling misunderstood because they look well and difficulty adjusting to a cancer label.

People with ongoing disease may face uncertainty, and they may have challenges in balancing hope with realism. We know that these emotions can be really, really challenging for people and you may feel that you want to put a brave face on for your loved ones, but it’s really important that you talk to your family and friends, tell them how you’re feeling and also reach out to us too.

Especially if you are having more bad days than good. We work very closely, as I’ve said, with various charities, and we can refer you on for counselling, relaxation techniques and complementary therapies. And that support is there for you throughout your entire cancer pathway.

So that leads us nicely onto holistic needs assessment. So these are appointments that you’ll be offered at regular intervals throughout your follow up by your CNS or key worker. And they aim to look at you as a whole person, not just as a medical condition. A HNA helps us to identify what matters most to you, it guides personalised support and strengthens communication with your health care team.

These appointments can give you the space to talk about physical symptoms, emotional wellbeing, work and finances, family and relationships, practical concerns or whatever is important to you. We do offer these at standard time points but you can ask for more frequent appointments if needed. It’s all about tailoring the support specifically to the individual person and making it so it feels beneficial to you.

So when should you contact your CNS or clinical team? Well like Doctor Abdullah said, we would always rather you got in touch with us than didn’t if you’re worried about anything, you should contact us if you have new or worsening symptoms, if you have any issues with your medication, if you have anxiety that is affecting your daily life, if you have a question and you’re unsure who to ask and above all, remember that you do not need to wait for a clinic appointment to ask questions. What I always encourage people to do is to reach out if there’s anything that you’re worried about, it’s always better to check early than to worry at home. That’s what we’re here for.

So to finish then my overall aim as your CNS and your key worker is to help you to live well, but what does living well actually mean? Essentially, living well looks different for everyone. It may include having a good understanding of your condition, being able to manage your energy levels, accepting a new normal, staying connected with friends and loved ones, and knowing how to ask for help if you are worried or have any concerns.

And finally, just a reminder that you will remain under follow-up with us for at least five years. If you do have any new symptoms, worries or concerns, then please, please do reach out. It’s important to remember that you’re not alone. There’s lots of support out there for you if you need it. Whether you are cancer free or living with cancer, your wellbeing matters and support continues for you.

So that’s the end of my talk. Thank you for listening. We have a great line up of speakers planned for the rest of the day. I would really encourage you to stay for the whole day, if you can, and to engage with some of the other attendees potentially during the break, as it’s so rare that we get a chance to have people who have been through kind of similar experiences together.

We were meant to have Katy up next, who was our amazing patient representative, who was going to tell you a little bit about her story, but unfortunately she’s unwell. So I’m going to try and tell her story on her behalf. It won’t be as meaningful, but hopefully you’ll get a flavor of what she’s been through. Thank you.

I’ll just go on now?

So Katy is a lady that I’ve known for a number of years now. She’s a few years down the line with her follow-up, but she I’m sure she won’t mind me saying had a previous cancer diagnosis before this particular diagnosis. So she’s been through quite a lot, but she’s always enjoyed and found it beneficial to share her story with other people.

So this is what she says. In 2024 I had two surgeries ending in a complete thyroidectomy because of thyroid cancer. How lucky we are to be living in a time of such great minds, caring surgeons, in my case the incredible Mr. Valko who supported me with the most amazing attitude of anyone I’ve ever met. I will be forever grateful to him and his wish to make me laugh.

I can’t tell you how much I appreciated that very moment to return to normality. It brought me right back to me, to who I was before I walked through the door and it gave me legs to go back out to face the world. Today I remember how I felt the first time I was told I had cancer. I didn’t find the world,

I found myself in a place where I could laugh. But in time, I watched as the funniest, bravest people I encountered took on the mantra of living and laughing. And for Mr. Valko to give that back to me at that very moment meant everything to me. For 15 years I have been under the care of oncology, having been diagnosed in 2011 with ocular cancer.

I have had both good and bad experiences. Learn about your cancer. Be your own advocate so that you know the right questions to ask so that it doesn’t take over your life. Remember to step back to be human, to laugh. Cancer can consume you and your family. Try not to let it. Cancer can give you a strength that you never knew you had or ever needed.

Face the world one day at a time. If today you have to sit with your feelings a little longer than yesterday, that’s ok. Don’t let fear keep you from questioning if something is wrong. More than ever, trust yourself. Even if it changes everything, it could save you. It has knocked my confidence many times. I’ve had to be strong and as I say to my children, when they’re going through something tough, they can go there, but they are not allowed to live there because it should never take up too much space within you.

Make it the tiniest part of you. You can let your hope be bigger. How do you stop the fear from everyday things that you do, when sometimes the fear creeps into the enjoyment of life? I’ve definitely been different this time around to how I was in my first diagnosis. Perhaps it’s because I’m 15 years on and I can look back at the fact that I might have had five years, which has turned into so many more, or the fact that even then I couldn’t appreciate that living with cancer, because the five years preoccupied my mind and everything I did felt like the last time.

This time around, I’m older but not necessarily any less scared. I promise I didn’t pay her to say the next bit. My heartfelt thanks to Soraya for her support in my life. The first thing I noticed about Soraya was her smile, and the name badge came second too so that I already felt in safe hands. Thank you for inviting me to speak today.

I am privileged to stand here with you all in strength and spirit. We are all craving to see all of life, missing nothing along the way. The smallest people in my world bring the gifts of smiles, of hugs, of love and of hope in every day. In the words of Eleanor Roosevelt, you have to accept whatever comes and the only important thing is that you meet it with courage and the best you have to give.

I get up and take my courage with me to everything. Cancer didn’t just happen at the moment it was found. Try not to panic. Take a breath. Everyone’s journey through cancer will be different. Live every moment, even in the fear. Let it keep you moving forward. Thank you, Katy.

I’m just so sad she couldn’t be here today because she’s an amazing speaker. But yeh we’re just really grateful that she allowed me to speak on her behalf. So thank you all.