Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Occasional Contributor

Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

, swallowing steak can be a challenge...need to keep making sure it is chewed enough. 

 

Am 9 years post head and neck surgery and radiation, have yearly checkups with my original surgeon at st Vincents clinic sydney. Still have dry mouth, drink while eating. Taste plateued at abot 75% I reckon. Can still taste chocolate though...

 

 

Reply
0 Kudos
Occasional Contributor

Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

@Alan22 

nice to hear from someone further out than me.  I can eat chocolate by having a cup of coffee or hot chocolate on hand.  Most of my meals are covered in gravy or white sauce, this works for me better than drinking water.  I am missing a chunk of taste buds as the removed a portion of my tongue and repaired it with a flap from my foreare.

One of the most challenging things is going to hospital for day surgery or pre admission clinics.  All they seem to have to offer is sandwiches which are almost impossible to eat.  Today I got icecream and yoghurt and was told I could have taken my own soup in a thermos.

My next project is to contain all patient liason officers public hospitals here in the west and request that changes be made to this process.  There are hundreds of people who for one reason or another are unable to have sandwiches.

I have been discharged from the ENT clinic and now my local GP keeps a very close check on me.

Reply
0 Kudos
Regular Visitor

Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Hi everyone!

This thread has been really interesting and informative so a big thank you to all the contributors!  My partner has recently started treatment following diagnosis of HNSCC, P16 positive.  He initially found a lump left side of neck and ignored it suspecting glands up following an ear infection. After three months he went to the Doc who said we will treat as cancer “until it’s not”.  Three biopsies an MRI and CT scan revealed secondary cancer in the node but unknown primary.  A follow up PET scan revealed the primary cancer in the left tonsil. This was removed by surgery in May.

He has now started treatment, so surprised that every where seems to have slightly different treatment regimes, my partner is being treated at Royal Marsden in London, uk 🇬🇧.

Day 1 was Cisplatin and start of radiotherapy 65gray x 30, with another Cisplatin on day 20. We have been told that neck surgery to remove cancerous lymph node is no longer looked at as an effective treatment in the UK and that interestingly Cisplatin twice during the radiotherapy has been shown to be as effective as weekly, based on clinical trials here.  

 

Iniitial diagnosis and tonsillectomy was done under private medical insurance but we have now transferred to NHS as the majority of cancer care here is NHS.  

 

We looked at proton beam therapy, there is only one NHS machine at the moment in Manchester, which wouldn’t have been available to him, so we would have had to self fund as the insurance company said this treatment wasn’t covered.

 

I have researched so much and having found you all I at least know what to expect.  My partner prefers not to know too much as that’s how he can deal with it.  We are all different I guess.

 

thanks again I think you are all amazing and an absolute God send to me.

Post new topic
Talk to a health professional
Cancer Council support and information 13 11 20Mon - Fri 9am - 5pm
Cancer Information and Support

Online resources and support

Access information about support services, online resources and a range of other materials.

Caring for someone with cancer?

Find out what resources and support services are available to assist you.