Differentiated thyroid cancer

Tom had most of his thyroid gland removed after being diagnosed with cancer as a toddler. His mother Jenny talks about his experience:

The first sign we saw was a lump on his neck. I suppose it had been going on for a while as he had trouble breathing but they thought it was asthma. When we noticed the lump, I took him to A&E. The doctors there sent me away saying it was a viral infection. Luckily I didn't take that as an answer and took him to my GP the following day, knowing my GP specialised in ENT. My GP was very helpful. He knew something wasn't right and referred me urgently to a paediatrician.

It took six months to diagnose him with cancer. He’d had endless tests and scans – sometimes on the same day at different hospitals – but they never tested him for cancer because they didn’t think he'd have it. After six months, the lumps were compressing his windpipe so they removed them, sent them off for biopsy and that's when we got the diagnosis.

Tom had the majority of his thyroid removed, followed by radioactive iodine treatment. When Tom was in isolation, following the treatment, they kept him quite heavily sedated for the first 24 hours and nurses worked shifts to go in to him. Following this, my husband and I could go in, using the “comforters’ and carers’” allowance of radiation which, I was told, is slightly higher than a normal person is allowed! We were very strictly monitored and had to go in with gloves, and metal jackets and Geiger counters. We were not allowed to exceed our daily radiation allowance and we shared the care with the nurses who were allowed about four hours each every 24 hours.

The isolation was the hardest part. The room had a metal automatic barrier across the front and if we had used our allowance, we had to be behind this. It is awful when you have a crying toddler wanting a hug. He didn't understand he couldn't come to us and trying to keep a toddler entertained without physically being in the room with him was hard. Also bathing and feeding were tough. Being so close to him meant the Geiger counter was beeping like mad, and when he went to the toilet it went through the roof. They put a catheter in him for the first two days due to the radiation being so high.

We kept him in pants and t-shirts for the whole time he was there as we could throw them away. We were not allowed to remove anything from the room. All his clothes, towels and bedding stayed on ‘lockdown’ in the room for six months afterwards before being destroyed.

One bright spot in the experience was that he had his own little garden, totally secluded from the whole hospital. One morning he decided to do what most little boys do and wee on the flowers. We had to report it and within minutes men arrived, dressed from head to toe in white suits and with breathing apparatus, to test the radioactivity on the little patch of wee! They had to notify all the ground staff that no one could do any gardening there for six months!

Tom is OK now but it’s a struggle to get his medication right so the problems he has are due to either too much or too little levothyroxine. Luckily, he only remembers bits of the treatment. He remembers being scared of squirrels and foxes outside his room at night but also that he enjoyed looking at the airplanes as we were near Manchester Airport. He doesn't remember a time when he didn't have to take medication. Sometimes he gets frustrated that he has to take tablets, especially now that he realises not all children have to, but he knows they will keep him well. He tends not to talk about it to his friends. Many don’t know he was ever ill. Kids don’t want to be seen to be different in any way.

My advice to any parent is trust your instincts. A parent always knows when their child is ill but getting a doctor to believe you and to take your concerns seriously can sometimes be difficult.

Medullary thyroid cancer

When he was just 3½ years old Cameron had preventative surgery to remove his thyroid gland after genetic testing showed that he would develop medullary thyroid cancer. Here, his mum, Jo, and Cameron describe what happened.

Jo: When it was discovered that I had the rare genetic disorder, multiple endocrine neoplasia type 2a (MEN2a), both my children underwent genetic testing which identified that Cameron had inherited the faulty gene. All patients with MEN2a develop medullary thyroid cancer (MTC) and so we made plans for Cameron to undergo a prophylactic total thyroidectomy when he was just 3 ½ years old. This was preventative surgery that aimed to ensure he never develops MTC.

Cameron had a few blood tests before surgery to see if he already had MTC, but they were not entirely conclusive. One, a pentagastrin stimulation test, was somewhat barbaric for such a young child. The histology later showed that Cameron was beginning to develop the cancer since there were areas of what is known as C-cell hyperplasia (the precursor to MTC).

In the beginning there was a difference of opinion about when to operate to remove Cameron’s thyroid. A paediatrician said to do so before the age of five and a surgeon thought it could be left until after puberty. Over the last eight years, things have moved on and there is now an understanding about the most appropriate timing for genetic testing and subsequent surgery in affected children, depending upon the exact gene mutation. At that time, it helped me more to talk to another family in the USA with MEN2a, whose daughter had undergone surgery at age four. She did have MTC and this gave me the determination to insist on early prophylactic surgery for Cameron to prevent him getting cancer.

Once the right surgeon was found it was relatively plain sailing. Kids are generally amazing at recovering from surgery and Cameron was up and about finger-painting and demanding jam sandwiches within an hour of waking from the anaesthetic. He stayed in hospital for just two nights after surgery mainly because he needed blood tests to check his calcium levels which had dropped quite a bit. He had had a parathyroid auto-transplant in his neck but it took a few weeks after surgery for this to start working again properly. Once home the blood tests continued for a couple of weeks at our local hospital. He found this rather traumatic and developed an acute fear of needles which has taken years and plenty of encouragement for him to overcome.

'As he was so young, it was hard to get Cameron to take his levothyroxine at first. He couldn’t manage simply to swallow a pill like adults do. I began by crushing the tablet and either putting it in a spoonful of apple sauce or dissolving it in a syringe of juice. The latter caused tooth decay very quickly and so I encouraged him to take his pills ‘like mummy does’. He now happily pops his pills with breakfast in the morning, but generally only if he’s reminded to do so!

At the time of his surgery Cameron was too young to understand much about what was going on. I told him that he had a ‘bad butterfly’ in his neck and that it needed to be taken out before it made him very poorly and he seemed to accept this. He has to learn considerably more about the other aspects of his condition as he grows older and I am totally honest with him when answering any questions he has. He also now knows the signs of hypothyroidism and recently insisted that he needed to go up from 100mcg to 125mcg because he was feeling so lethargic, had bags under his eyes and was getting chubby around the middle – he was proved correct with a blood test!

To other parents I would say, get informed and don’t be afraid to question your child’s healthcare professionals. When your child faces a lifetime of monitoring blood tests, it is essential to insist from day one that these are done by someone experienced in order to avoid repeated jabs and the increased stress and anxiety that go with this. Finally, be very honest with your child; they know if you’re not!

Cameron, aged 12: I can’t remember much about my operation because I was only three! I do remember the hospital a bit because it was fun, the nurses were really nice and they had an aquarium with loads of different fish in it.

I take my pills every day with my breakfast, but sometimes I forget. I now take two pills, a 100mcg and a 25mcg. I was on 100mcg but I was feeling tired all the time so that’s when mum and I thought that I needed more. I had a blood test and the doctor wrote a letter to say that I needed another pill. I now have much more energy. I play lots of football and cricket and I also do cross-country running and netball at school. I think I feel like a normal boy! Some of my friends know a little bit about my condition and I wear a MedicAlert bracelet, but other people don’t know that there is anything different about me.

To other children like me I would say don’t panic about your blood tests. Try to watch the TV or something while they do it. I think the blood looks like Ribena when it goes along the tube and now it makes me laugh.