Parotid Gland Cancer

After 4 years of being told the lump on my Parotid gland was "harmless" and "nothing to worry about", a different Consultant insisted I have surgery to remove it. I was later told it was an "Adenoid Cystic Carcinoma." A rare malignant cancer. There is no Chemo that can treat it so I am just about to commence 6 weeks of radiotherapy at the Royal Marsden.

The doctors and various specialists have told me the awful side effects I can expect. I have been very naughty and have spent hours on the internet researching this cancer and it appears that it will very possibly kill me in the next 10 - 15 years with or without radiotherapy. I am now questioning if the radiotherapy will be any use to me. Can anyone give me advice? 

  • Hi Chris

    hope your feeling as ok as possible, went through the same as you last year.  I mouth washed with sodium bicarbonate, salt and boiled water every hour while awake and I had 2 lots of Maniuka honey max strength every day, it definitely helped.  Keep doing head, neck and mouth exercises to keep the stiffness away.  Good luck.  It gets worse before it gets better but there is light at the end of the tunnel !

    Shirley

  • Hi Hazel, 

    Unfortunately there is no-one else who can drive me to the hospital so I have to be careful with the painkillers. Also I want to avoid patient transport if I can. A few years ago I injured my leg and had to use patient transport and sometimes it can take hours to get home, especially if they drop off lots of other patients first.

    I've taken your advice and I am diluting the Ensure with milk. It is much better.

    Hope you are well,

    Chris 

  • Hi Everyone.

    I just wanted to let you all know about a mouth rinse I have discovered that greatly reduces the sore mouth and ulcers caused by radiotherapy. It is called "Caphosol". You rinse your mouth 4 to 10 times a day with it. My mouth got so bad during the second week of treatment that I could not eat. After using Caphosol for a couple of days the soreness and ulcers disappeared. My doctor kindly provided me with a repeat prescription after I had paid privately (£50) for the first supply. Please note that it does not help with "dry mouth" or help with loss of taste. But it least it helps with the pain and difficulty in eating.

    Chris

  • Hi Chrisuk1, thanks for this update as so many of us need as much help as possible with the side effects of radiotherapy, as they say "every little bit helps". Hope all is going ok with you, all the best, take care.

                                                                                     Chris 

    Its sometimes not easy but its worth it !                Click here to find out more

  • So glad it helped you. It certainly sorted me out. 

    Dani
    Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
    The blog is my personal cancer journey, warts and all. 

  • Hi Chris

    great to hear you have got some pain relief! Good luck with the rest of the radiotherapy, over half way through now.

    take care

    shirley