There are 4 main types of thyroid cancer: papillary (the most common type), follicular, medullary and anaplastic – the latter two being rare.

Symptoms of thyroid cancer are most likely to include a lump or swelling in the throat or neck, difficulty breathing or shortness of breath, difficulty swallowing, a hoarse voice or cough that doesn’t go away, and enlarged lymph nodes in the neck.

Our very own co-founder Kate Vines has lived with metastatic Medullary Thyroid Cancer for 29 years. She was diagnosed at the age of 33, after finally recognising a long-standing lump in her neck and worsening fatigue.

“I can remember when I was 19, I used to routinely fall asleep at my desk at lunchtime, and at the dinner table when we were out at a restaurant. No-one seemed to notice or say anything, just “oh, Kate is asleep at the table again”.

Kate reflects on the time of diagnosis and initial treatment, having been a young, seemingly-healthy Mum at the time,

“I think I was in denial for quite a long period of time. My husband at the time told me many years later that the doctors had given me a 3-month prognosis. I’m now very grateful that he hadn’t told me at the time because I think I would have just given up. Instead I found a resilience and determination that I didn’t know I had.”

There are some risk factors that have been identified to show an increased risk of developing thyroid cancer. These don’t automatically lead to a thyroid cancer diagnosis but could be one of many contributing factors . These factors can include exposure to radiation, a family history of thyroid disease or thyroid cancer, and certain genetic conditions (such as familial medullary thyroid cancer, MEN 2A syndrome, MEN 2B syndrome).

If you have been diagnosed with thyroid cancer, you will be referred to an oncologist and, often, a multidisciplinary team will look after you. Treatment will depend on the cancer’s stage at diagnosis, the severity of symptoms, and general health at the time. There are several options for treatment, including surgery to remove part or all of the thyroid gland, radiotherapy (including radioactive iodine therapy), chemotherapy, and/or targeted therapies to destroy cancer cells – which are becoming more common.

Treatments have developed and evolved over the years – especially for rare cancers, like Kate’s Medullary Thyroid Cancer.

“When I was first diagnosed, my doctor said he’d never seen anything like it before, and there was no internet to look up options or information. Surgery was the only treatment option.”

Radiation was suggested as a possibility, but Kate has since been told it would’ve killed her. She remembers having 7 major surgeries all together, including a total thyroidectomy and a thoracotomy to excise the metastases 6 weeks later. Over the years, she tried various other therapies given there were no other options, including microwave, alternative and complementary therapies, one based in Mexico. Chemo worked for some time in reducing pain from bone metastases, but eventually it overwhelmed her. Fortunately there have been many advances, and this year Kate turned to genetic testing through the MoST program.

Research is constantly uncovering new ways of diagnosing and treating different types of cancer. Depending upon type of cancer, some people might be offered the chance of participating in a clinical trial to test new ways of treating thyroid cancer. MoST (Molecular Screening an Therapeutics clinical trials and immunotherapy) is a molecular cancer study and involves cancer patients being genomically screened to see if they have a particular mutation that might make a  new and emerging treatment (on a clinical trial) more effective against their cancer.

It was in this way that Kate discovered she had a known mutation called a ‘RET mutation’. This then made her eligible for a Loxo-292 clinical trial which started last year at Royal North Shore Hospital. The only other 2 drugs used to treat Medullary Thyroid Cancer are not listed on the PBS, and Kate would have had to self-fund to access them. The problem with rare cancers is that often the costs of sponsoring medicines outweighs the benefits for industry given such a small patient numbers. Small patient numbers also mean larger trials cannot be carried out to test the drugs’ effectiveness. So, with that lack of good evidence, the chance of PBS funding is further challenged.

For Kate who has had cancer for nearly half her life and has never been in remission, clinical trials are not just optional, but the only legitimate treatment pathway currently.

“I think it’s probably been a good thing that I can watch certain blood markers so that I can keep an eye on things. But otherwise, I’ve just tried to get on with my life as normally as possible because I can’t maintain the focus on my cancer when it’s been going this long”.