Alex's story

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Alex's story

My name is Alex, I was first diagnosed in 2016 with Adenoid Cystic Carcinoma.

What were you symptoms?

I had a number of symptoms, over a period of realistically when I look back years, that weren't diagnosed properly.  I went to and from my GP with problems with my ears, my sinuses, some headaches, and it was only when I developed a really bad snore that sounded like a 'honking goose' that my husband forced me to go and see some specialists. 

Very quickly at that point they put a scope up my nose, and did some scans and realised that there was a big mass there.  They then did a biopsy in hospital which then gave me the accurate diagnosis of Adenoid Cystic Carcinoma.

What happened after your diagnosis?

Very quickly after the diagnosis a meeting was set up with various experts to assess how best to treat my cancer due to the location and the severity of the spread.  Different options were discussed in terms of surgeries and in the end what was chosen was an endoscopic approach through my nose which was minimally invasive and allowed me to heal much faster.

They ('they' being my ENT surgeon who had been excellent throughout), managed to remove around 70% of the tumour at that time. 

What happened next after your surgery?

Following the surgery I went over to the US and had proton radiotherapy and concurrent chemotherapy.  It was a challenging period when I really was quite ill and quite  far away from home so I was very glad to get back at the end of the couple of months.  Most people do simply have the radiotherapy.  The concurrent chemotherapy was to provide a 'boost' for the radiotherapy itself, so it was merely to 'activate' the radiotherapy for a potential extra 5-10% potential effect.  I didn't really believe it would improve the disease itself.

What advice would you give to your former self?

What I would say to myself looking back a few years ago is 'trust your own body', if you feel something feels strange, doesn't feel right, push the doctors.  Sometimes you are the best expert in your own self, and even if you do get into a situation where there are very complex medical questions being asked, don't be afraid to put your own case forward, ask for a second opinion and really be your own advocate.

How has being part of Salivary Gland Cancer UK helped you?

Salivary Gland Cancer UK and the European equivalent which was more active for a while prior to this one, was really a way to connect with other people with ACC and other salivary gland cancers.  I think that is incredibly precious.  You go to another cancer support group and you don't recognise yourself, and you don't see anybody that remotely looks like you, or has a story that reflects yours.  Meeting that community and getting access to that means that I have made lifelong friends, but also good to hear about the research that is ongoing and connect to the other side, the medical perspective, as well.

What have you found helpful through your journey?

For me what helped early on was perhaps not what helps everybody, but I enjoyed actually researching the disease, the different treatment methods.  That gave me a measure of control that I felt I had lost in my life.  Going forward, coming out of treatment, I found that a difficult period and I actually had some therapy to help me get a handle on with what goes on in your head, and how to not go down spirals of anxiety and so on.  Because it is a disease that run for years, and decades if you're lucky, managing that can be challenging.  I think having that support organisation again comes in to really helping that side of things.

I was lucky enough to go through IVF and get pregnant a couple of years ago.  It is something that I never thought was happen.  It really changed my life forever and now I have a young boy who is nearly two (and you can see I'm smiling already) and that has changed my life completely.  It made it feel so much more precious than it ever did before and I can't wait to get home to him tonight

The time when I had the slowest growth of my tumours in my lungs is while I was pregnant and when he was a baby.  I think that smiling alot helps.

Do you have any advice for someone who has been diagnosed with ACC?

Being diagnosed with ACC will change your life, it undoubtedly will, it will probably shorten it, it will change your quality of life, but it's not your entire life.  There's still the whole rest of it.