Sarah’s Story

Diagnosed with Papillary Carcinoma, August 2008, age 34
Total Thyroidecotomy, September 2008
RAI, November 2008
Right superficial parotidectomy, November 2009
Left superficial parotidectomy, April 2010

My diagnosis came about from an almost an incidental finding. I had had a ‘feeling’ there was something wrong with my neck for over a year and numerous symptoms which I now know indicate thyroid cancer.

I finally got a referral to an ENT consultant about a problem with my ear, and, out of sheer desperation, asked him to check my neck. He found the lump on my thyroid instantly.

I had an ultrasound and biopsy two days later and was given the diagnosis of thyroid cancer two weeks later. At the time I was almost relieved as I was convinced there was something very wrong with me.

My children were aged three and six, and my youngest child had had a succession of hospital treatment and surgery since birth at Alder Hey Children’s Hospital, so it seemed like another massive hurdle to overcome, especially as she was scheduled to have further surgery the same week my thyroid was due to come out.

She suddenly took second place to me and her operation was rearranged. My tumour turned out to be bigger than shown on the MRI and CT scans and was graded T4.

A few weeks later I had a test dose of Radio-iodine and returned to the Royal Liverpool hospital the following day for a scan which was supposed to take about 20 minutes.

I had planned to have the scan and then go in to Liverpool with my Mum to do some Christmas shopping. However, the initial scan showed an extra spot on my collar bone and so it was repeated.

The second scan indicated a definite spot and half an hour later I had a helical CT scan. In the meantime I had to telephone my Mum to ask her to come back to the hospital to meet me (patients only allowed in Nuclear Medicine) whilst I went through with the scan.

I’m sure people would say that to have any part of you scanned is horrible in that situation, but I think when it is your head and the scanner is literally spinning an inch from your face for 40 minutes, it is just awful.

I then had a consultation with the Nuclear Medicine Consultant who told me she thought the cancer had spread to my bone and was in my collar bone.

She wanted to perform a bone scan that afternoon so I had the injection and had to sit and wait on my own in the waiting room for three hours for it to take effect.

They did allow me to find my Mum and tell her, and go out to ‘phone my husband, but my Mum wasn’t allowed to wait with me in the waiting room. Anyway the hours passed by and I had the bone scan which turned out to be clear.

The Consultant said she thought it was just a collection of thyroid cells lodged behind my collar bone but she still wanted me to be admitted four days later to undergo the radio-iodine treatment.

I had a busy weekend preparing for being away from the children for three and a half weeks before going in for the treatment. Twelve hours after taking the capsule, I woke up with hugely swollen salivary glands, fingers, yellow skin and severe nausea.

I found out 18 months later that I had been given a ‘double dose’ of radioiodine, twice the standard dose. However, it all settled and somehow we got through the following three and half weeks of me not being able to go home because of the children being so little.

I had my scan three months later and all was well. I was elated . . . for six weeks! I woke up in May 2009 with a hugely swollen and painful left parotid gland. The Nuclear Medicine consultant told me it would settle.

It hasn’t to this day. The following month, my right parotid gland swelled and three months later my tongue went numb on the right side due to damage to the right submandibular salivary gland.

I had numerous appointments, sialagrams, an MRI scan where the doctor couldn’t inject my vein with the dye and I ended up covered in bruises and bandages, and finally an abscess developed in my right parotid gland, so I was scheduled for surgery to remove the gland in November 2009.

In the midst of all this, I realised my fingers, toes and lips were tingling. After three visits to a Neurologist and nerve conduction studies, which I had to endure two weeks after my parotidectomy, it seemed that I had low calcium levels.

It had been a little low after the thyroidectomy but it was never checked again and had just got lower and lower over time. I now take three sandocal tablets daily.

In April 2010 I went back in to hospital to have my left parotid salivary gland removed, but unfortunately it was so badly damaged it had literally set like cement over my facial nerve and I sustained a facial nerve palsy.

My face had totally frozen on that side. I couldn’t close my left eye, speak properly or eat or drink easily. The following week I received a phone call from my employer, a local college, to say that my department was undergoing a restructure and we were all threatened with redundancy.

So amidst the numerous follow-up appointments and recovery I had to undergo interviews to keep a job.

I went to a specialist clinic in Manchester where facial nerve palsies are treated by using a Neuro-4 stimulator daily (I had to put eight probes on my face for an hour per day and electric shocks were sent through to stimulate the nerve).

I also developed another abscess which did seem to improve with five weeks of antibiotics. The palsy improved over three months and I have only slight weakness now. I lost my job though.

The left side of my face began swelling again in July and became painful again as the remaining parotid tissue is damaged. I have had another MRI scan and further sialograms, but no-one is prepared to remove the residual tissue because of the potential damage to my nerve.

So I have to live with almost constant pain in the left side of my face which radiates up to my ear and causes dizzy spells. Two weeks ago I developed another infection in the residual parotid tissue this time on the right side which was swabbed, so I am back to the surgeon again this week for the results.

My tongue is permanently numb on the right side which makes speech difficult at times and is very hard to deal with. I have seen many doctors who just put the damage down to the high dose of radio-iodine.

One doctor actually implied that it is my fault that I have had this reaction to it! I currently have further appointments planned and am very much hoping that someone will be able to do something to help me.

Butterfly Thyroid Cancer Trust has been huge support to me and we were very grateful to receive the Michael Crawley Break Award. We are taking the children to Euro Disney in April!