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Ian's story .

Ian on being diagnosed with ACC, how he managed work and treatment and dealing with radiotherapy.

ACC diagnosis

My name’s Ian Truman. I was diagnosed with Adenoid Cystic Carcinoma of the right submandibular salivary gland.

So my diagnosis journey – I had a bit of pain in the salivary gland – I went to my GP who booked me in for ultrasound*. I had an ultrasound, and they suggested that I would need to have a fine needle aspiration**. I had that – and then from that they required a biopsy, and from the biopsy, I was diagnosed with Adenoid Cystic Carcinoma (ACC).

* Ultrasound - Bouncing sound waves off tissue to get a picture of soft tissue.  ** Fine needle aspiration – where a very thin needle is used to draw cells or fluid from a lump under the skin.

My treatment

So my treatment programme from that moment was surgery – so resection – which was a couple of hour operation to remove the salivary gland – and then six weeks convalescence, followed then by six weeks of radiotherapy.

Managing work

Handling my career and the treatment and everything I was very fortunate in having a very understanding company that I work for. They said I didn’t have to work if I didn’t want to. I decided – based on my Oncologist who said it’s good to keep working – so I worked part-time. And then during the radiotherapy as time went on I got more tired so I stopped working for the last two weeks during radiotherapy and a week after, and then I just slowly build myself back up to work.

Minimising radiotherapy side effects

The one thing I would go back and tell myself that I know now that I didn’t know then is that with radiotherapy –if you are careful with what you eat and you really look after your mouth you don’t have to have the really bad side effects that they warn you of. I didn’t have bad ulcers in my mouth or the pain, and I didn’t need to feed through a tube. So I found just being really careful about that – it’s not always the worst-case scenario.

Massage after surgery

So a piece of advice I would give to people after head and neck surgery that no-one told me about is I started to get a bit of a saggy chin – and that’s because they’ve removed the lymph nodes and I discovered that that is normal, and you can do massages to help to move the lymph flow so you don’t end up with a saggy chin. There are even some things you can wear at nighttime to help compress your chin, to stop you from getting this.

The SGC UK network

What I feel I get out of the Salivary Gland Cancer UK network is it’s so nice to meet other people who’ve been through what I’ve been through. Because it’s such a rare cancer, I’ve known people to go decades without ever meeting or speaking to someone who has had that cancer – so that’s a really nice support network to have. But what’s really important for me is driving forward, looking for research, and hopefully one day finding a cure for this horrible disease.