Starting radiotherapy for nasopharyngeal cancer

Hello

First time post here & wanted to connect & say hi.

In February I was diagnosed with nasopharyngeal carcinoma (T1N3M0). It came as a complete shock and really floored me. Treatment began quite quickly and I’m just about to finish my third cycle of chemotherapy before a 3 week break and then start daily radiotherapy for 6 weeks.

Nasopharyngeal cancer appears to be quite rare so I wanted to connect with people who are going through / have been through similar and those who’ve been through the experience of radiotherapy to the head and neck area.

While chemotherapy has been rough in parts I think I am more anxious and concerned about the side effects of radiotherapy and all the issues that come with it.

I will have a read through of some of the older posts but would really appreciate any advice on how to get through it. I have my radio planning session next week and mask fitting appointment and I’ll be honest I’m just totally dreading it.

Thank you in advance for any advice 

  • Hi Becks80, welcome to the group, it's a place where we all try to help each other if we can. There are many of us on here who have had RT, and are here to tell the tale, the treatment isn't easy, but it is doable, as for the side effects, there are a few, but you wont get all of them, some get more than others, some get very few at all. The side effects are manageable and they do get better, as you recover. As for the mask fitting, don't worry too much about that, the team will talk you through everything. All the best.

    Regards Ray.

  • Hi Becks. I’m Hazel welcome to our small group. I’m 3.5 years post radiotherapy for tonsil cancer with several affected lymph nodes.35 radiotherapy sessions it’s not easy but it’s disbud we get side effects as Old biked has said they are manageable. Treat the mask as your friend it’s going to help save your life. I personalised everythjng gave it a name etc my blogs below with other links ut may help you. 
    any questions just ask one of us will get back ti you.  In the search bar type nasopharyngeal cancer some posts should pop up. 
    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Hi Becks and welcome.

    I was diagnosed with base of tongue cancer in May 2018 and had robotic surgery to remove the tumour plus a neck dissection followed 6 weeks later with radiotherapy.  I finished treatment in August 2018.

    Ray is spot on about the severity of side effects affecting people to varying degrees so best to take each day at a time through the treatment.

    There have been numerous discussions in the last couple of weeks on the forum about mask fitting.  Have you managed to read any of them?  There's one called "Just Had Panic Attack with Mask Fitting" and another "Mask Fitting and Therapy Dates". Those are the 2 most recent ones.  If you read through you'll find a common thread of people anxious about the process but finding coping mechanisms and realising it's not as bad as they feared.

    Your team will be super supportive and helpful during all the planning and fitting.  If you have any worries just tell them and they will do all they can to make things easier.

    If the mask is uncomfortable let the team know straight away and they can make minor adjustments.  Some people find it helpful to ask to have the eye holes cut out.

    Likewise, if you have any anxieties or pain during the treatment just let your team know and they will be able to prescribe suitable medication.

    Presumably you also have a contact number for a Clinical Nurse Specialist?  

    You'll find lots of helpful advice on the forum from people who have had similar treatment Becks so just shout if you need to.

    Linda x

  • Hi Becks and welcome to our community. Prompted by Hazel I’ve done a search for the most recent posts from people with the same cancer as you. There are a few but they all seem more advanced and serious so probably of little help. 
    But. RT to the head and neck has some common features and I’m sure your team has gone through the side effects. Nobody gets them all. Most commonly are pain,  inability to swallow, and mouth ulcers. These are all manageable and are temporary. It’s a tough treatment but you can do it a day at a time. Don’t be brave. Tell your radiographers daily how you feel and they will look after you. 
    I’m three years out and practically my old self. I can eat anything at all and the only thing I can complain about is a slight lack of saliva. 
    Generally we recover very well. 
    Stick around. There’s lots of help and support as you go on. 
    Best wishes 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thank you Dani, Linda, Hazel & Ray for your replies, your reassurance and warm welcome to the group, much appreciated 

  • Hello Becks. You must be at the start of your RT now. How are you feeling? 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Becks80 I have the same cancer and have recently finished 7 weeks of radiotherapy combined with the 3 rounds of chemo prior to this. Is there anything specific you want to ask me. My advice is to try and eat as much as you can now as it may become difficult further into your treatment x

  • Hi Becks you’re welcome hope everything going ok. Baby steps one day at a time xx

    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Hi  welcome to the community. Glad to hear you’re through treatment. Wonderful you can advise too. NP cancer is much rarer than bog standard OP so your input will be invaluable. I hope you’re feeling as well as you can. 
    Best wishes 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Happy to help with any questions. The meal replacement drinks are invaluable when the mouth and throat are too sore to eat but remain positive as it will pass. My taste has started to return and I am eating better than I was. I used a co7ntdown to mark milestones in getting through the long period of radiotherapy. Sleep when you need to which I was not used to.