What were your first signs or symptoms of Papillary Thyroid Cancer?
In January 2017, I began feeling breathless quite frequently.
It began when I was walking uphill but then it progressively got worse, and I would feel breathless walking for even a minute!
I went to the doctor, and I was told I was “borderline asthmatic”; I also had the option to get an inhaler but being a student at the time, I didn’t want to pay!!
I said I’d keep an eye on it and see if it got worse or better.
Fast forward to May/June of the same year, I was suffering from intense migraines, and I was super tired all the time.
I would go into university for an hour or so in the morning, come home, and nap the rest of the day – I had never experienced fatigue like it.
I’d say these were my main symptoms looking back on it.
How did you discover you had Papillary Thyroid Cancer?
Following on from feeling like this, I had called in sick to work a couple of times which was unlike me.
I thought I was burnt out from working and finishing off my school work – it was deadline time so I had essays to finish and exams to prepare for.
A woman I worked with insisted I go to the doctor as she knew something wasn’t quite right with me.
I just wasn’t feeling myself. I booked a doctor’s appointment and was seen the same day.
I told her how I was feeling and she did an examination on me.
I did the tests she asked and she couldn’t find anything wrong with me from them.
“Have you noticed that your neck is slightly swollen?” were the words I heard next. My hands immediately moved to my neck and I was trying to feel for it, which I noticed.
She asked if she could have a look over and began feeling my neck. She told me it would probably be nothing to worry about, maybe a goiter, but I should get checked out anyway.
I had my bloods done which came back fine. I had an ultrasound done and during which, I was told to get in touch with the doctor ASAP.
I automatically knew something was wrong. I managed to get in the next day and I was told it wasn’t a goitre but I was to be referred to the hospital for further tests.
The word “cancer” wasn’t explicitly used but I knew that’s what they were testing for.
I had another ultrasound, along with a biopsy, a CT scan, an MRI, and I had a camera to check my vocal cord area. My results showed Papillary Thyroid Cancer.
How did you feel after your diagnosis?
It was all such a blur. I was scared as I didn’t know anything about a thyroid or where it was in my body. I was told it was “one of the good ones to get” which confused me even more.
I felt scared but hearing these words made me feel like that was an invalid feeling.
My whole outlook immediately changed. I didn’t realize how resilient and brave I could be – I used to be frightened of hospitals and needles, I would pass out having blood tests done, but I knew I had to somehow get through this.
You can have everyone on your side but it’s you that’s going through it.
It’s only you that fully knows how you’re feeling at a given time and it’s you alone in the scanning machines and on the bed being put to sleep for surgery.
What was your treatment like?
Following my diagnosis, I had a full thyroidectomy followed with Radioactive Iodine Treatment (RAI) 8 weeks later.
In May 2018, I underwent another surgery for recurrence and again in May 2019. By the end of it, I had a full neck scar as it had crept from the left to the right side.
In April 2020, I was told it had returned again. After having 3 surgeries, they didn’t want to put me under the knife again and I was told RAI wasn’t helpful for me.
The next step was 6.5 weeks of external beam radiotherapy which was long and intense.
I had some horrific side effects from it and was told everything that could initially go wrong so, understandably, I was petrified!
It’s been a long winded process for me, and everyday is scary. I never know if it will return – I was told by my surgeon after my final operation he didn’t think it would be the last time I would be seen.
I was told it is likely something I will have to live with and manage which was scary. There is always a thought in the back of my head that is worried it will return but I don’t know if or when.
Do you need routine care or special medication?
Thankfully, I am just on levothyroxine as I no longer have my Thyroid.
I am regularly monitored by the hospital. I have blood tests done regularly and if they show anything, I will be sent for a scan but thankfully, it’s been almost 18 months since I finished radiotherapy and nothing sinister has occurred!
When were you officially cancer free? How does it feel? What did you do to celebrate?
I have never been given the all clear, and I think it’s unlikely I will so, I take each day as it comes and each appointment as an indication as to where I am.
In terms of celebration, I try to live my life as best I can and spend time with my favourite people.
I acknowledge each time I leave the hospital with no suspicion of cancer in my body and make the most of it.
I’m living my life. I was first diagnosed in freshmen week of my final year at university so I had to put it all on hold and I returned the following year.
I have now just finished my Master’s degree and I am grateful I have been able to do so, especially with no sign of active disease in my body.
Are there any lingering side effects or symptoms that you have a hard time dealing with to this day?
The main thing I struggle with is fatigue but that is a day-by-day process and I never really know how I am going to feel each day.
I suffered side effects from radiotherapy at the time – loss of taste, inability to swallow properly, and extreme throat pain. This has all improved over time.
Currently, however, I do sometimes still suffer when swallowing things such as bread. I also find that if I swallow something and it goes down the wrong way, when I cough I struggle to get my breath for a while, which can be really scary.
What would you say to other people who have recently been diagnosed with thyroid cancer?
Find people who can relate to you. My Instagram is a safe place and I have found it incredibly helpful to speak with people who understand Thyroid Cancer due to a personal experience of it.
Be careful with any Facebook groups you join. Some of them can be really helpful but others are full of scaremongering and are totally unhelpful!
Allow yourself to feel whatever emotions you are feeling – do not let anyone minimize what you’re going through.
There is a very high chance you will survive it, but you will come out the other end a completely different person. Cancer is cancer and the effects of going through such a thing are real – be kind to yourself.
What do you most look forward to doing in 2022 and beyond?
I look forward to doing what I have been doing for the past year – being in control and living my life.
What helped you most throughout your journey? Were there any specific resources that helped you through treatment?
The Butterfly Thyroid Cancer Trust – they are a UK based charity that are the first of their kind to support patients of Thyroid cancer. I cannot recommend them enough.
My blog has helped me massively also. I began writing about my cancer as a way to get my thoughts and feelings down.
It also helped people who are close to me know about what is happening. I then began connecting with people and it started to grow. It was the best thing I ever did and I was so close to not doing it!
February 4th is World Cancer Day, a day to raise awareness of cancer and to encourage prevention, detection, and treatment. If you or someone you know is experiencing any symptoms of a thyroid condition consult your healthcare provider right away. Always listen to the advice of your healthcare provider.
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Medically reviewed by
Natalie Bessom, D.O. Board-certified family medicine doctor with specialty training in nutrition, USA