Jim's story

Jim's story

How were you diagnosed with ACC?

I was diagnosed in August 2018 and was told that the only option was a laryngectomy, which of course if removal of the larynx, followed by adjunct radiotherapy.  Although that was in August I didn't actually get operated on until late October.  That was actually my request because I wanted to finish the work I was doing at the time and leave and actually take early retirement.

So I had my operation on 24th October 2018 and it was successful, although I suffered from aspirant trachea during the operation and that is why I am using an electrolarynx because I am not suitable for an in-dwelling tracheaoesophageal prosthesis attempt, because of the split in the trachea right on the point where the tip would have gone and that's why I have got this.

Have you had any treatment recently?

Most recently I have had 28 sessions of a treatment known as SABR*.  SABR is in essence an ablative process using radiotherapy and it is designed to target small tumours.  My understanding is that I am actually one of the first people to have SABR done on ACC and that is being monitored.  I have yet to see the results of that and my oncologist Dr Metcalf will be monitoring that and I will see him in a few weeks time.  

So basically how SABR works is that it is only used on tumours that are less than 5cm and I feel alright with it.  A little tired but it's alot less dramatic than standard radiotherapy.

*More details on 'SABR' or 'Stereotactic Ablative Body Radiotherapy' can be found here.

How important do you feel organisations such as Salivary Gland Cancer UK are?

I don't think there is enough awareness of rare cancers, and this forum gives an opportunity for a bit more concentrated effort in both bringing together both people who have this issue and then broadcasting the message back out to the broader community, and hopefully helping people in the future as well as current patients. 

So the work that Salivary Gland Cancer UK has been doing in the short time it has been going is remarkable and I hope to continue to assist with that in the years to come.