Jamie's story

Jamie's story

My name is Jamie MacDonald, I’ve got ACC. I was diagnosed with the solid tumour and the NOTCH gene mutation.

How was your ACC diagnosed?

In 2019, March of 2019, I had a slight twinge going on in the corner of my mouth, that lasted about an hour. And I had three episodes over the period of a week. My wife spotted the movement of my mouth on the third occasion, and so she suggested going to the doctors, which I was gonna go anyway.

Anyway, I went to a doctor and the doctor was concerned. Wanted to call me an ambulance straight away, as she thought I was having a stroke.

I didn't think I was having a stroke, but anyway, I went to the hospital. They done an MRI and CT with contrast and bloods, and kept me in for two nights and then decided that I wasn't having a stroke and discharged me with a diagnosis of Bell’s palsy with no follow-up.

I went away, I wasn't convinced, gave it a few weeks and then I decided to contact a facial palsy specialist at another hospital. I got invited in and saw one of the consultants there. 

She then referred me to another specialist, who with his colleague, done a physical examination.

They felt, what appeared to be, what they thought would be a lump and then decided to refer me for an ultrasound with a fine needle aspiration. A few weeks later, went for the ultrasound, the lady done the ultrasound and she said “I don't need to do the aspiration, I can tell by the characteristics that this tumour is a benign tumour”.

I, again, didn't feel this was quite right, but I thought I'll give her the benefit of the doubt because I knew I was going to see the specialist in a few weeks time.

Went back and saw the specialist and he noticed on the records that the biopsy wasn't done, which was concerning for him, and obviously myself. He then referred me back to the ultrasound, and unfortunately, I've met with the same person. 

She asked me why I was back, and I did explain to her that I was surprised that she didn't do the biopsy weeks ago. The conversation got quite heated. She was sort of stating that, you know, she had been doing it a long time, this was her speciality, that she didn't need to do the biopsy.

I stood my ground, I said look I'm not walking out of here today unless I've had this biopsy done. Anyway reluctantly, she went ahead and done the biopsy. When I went back two weeks later, I was presented with two nurses and then at that stage, I was told that I was diagnosed with ACC, a rare form of cancer.

What treatment did you have?

Yeah, so I had a neck dissection, tumour, salivary gland, and quite a load of lymph nodes removed from my neck. And then after the surgery had healed, I had six weeks of radiotherapy.

What side effects do you have from the treatment?

To be perfectly honest I'm quite lucky, in the fact, that even though I was diagnosed with a solid tumour and NOTCH gene mutation, apart from a little bit of numbness on the face I don't really have any problems.

I don't have any pain, I don't have any problems, even though, like you know dry mouth syndrome when you have the salivary gland removed, I don't seem to have any of that. So I’m quite fortunate in that respect.

What advice would you give to someone diagnosed with a salivary gland cancer? 

Although you’re diagnosed with cancer, there's more to life after diagnosis. So like I say, stay positive keep the mind focused, and baby steps, and move forward and enjoy life.