Advice on limiting chemoradiation treatment

My daughter recently had a tonsilectomy following diagnosis of cancer. Unfortunately some tumour could not be resected and she is starting treatment soon. She has decided as only the right tonsil was malignant only to have treatment on that side, also due to the saliva glands being destroyed. I am concerned that limiting the treatment might increase the chance of recurrence if she doesn't have the whole neck treated. Her Oncologist said there was no going back if she took that route. Please can anyone advise

Jo

  • Hi Jo

    What a difficult descision. Its hers and hers alone. If the oncologist recommended radiotherapy over whole area then its best to take that advice. It only takes one remaining cancer cell to start a new tumour. If the cancer does recur I think Im correct in saying you can't have a second go at radiotherapy at the same site. I have had radiotherapy to the throat and neck, the short term side effects are very unpleasant, and there are long term ones to consider, including the loss of some or most saliva production. However there are ways to deal with it and it is possible to live a reasonably normal life afterwards. The alternative is to take a risk on a much shortened life expectancy. She really needs to talk to the oncologist, to discuss her thoughts and fears, go with your daughter and write down on paper all your questions before the appointment and take your notes with you. Kim

  • I agree that if radiotherapy is offered on both sides it's best to have it to ensure there are no cells on that side. I had mouth cancer and cells in my left lymph nodes ( very hard to detect until after my nodes were removed) my oncologists advised radiotherapy to both sides to ensure there was no spread, so I had it done. I did suffer swallowing problems and had to have a tube feed for 6 months in my tummy but I'm ok now, I'll admit I'm left with reduced saliva and taste but I've been clear for 2.5 years now so hopefully it was the right decision for me 

  • Thank you so much for replying, it is invaluable to have your responses and you have confirmed my feelings that it is much better to have both sides treated. Now to try and convince my daughter.

    Jo
     

  • Thank you so much this is invaluable advice.

    Jo

  • Your so welcome and I wish her all the very best  with her treatment.

    Carol 

  • Hi Kim

    Since we last spoke, my daughter has had two weeks of treatment and found out during the second week that they were treating both sides of her throat, which she is not happy about.

    Last week she decided to come off the treatent altogether as she felt it was too severe for her to cope with. She said it was like eating glass and she hadn't eaten properly for five days.

    At her GP's suggetion she is now having Accupuncture and Chinese Herbs!!

    Have you heard of anyone els being cured by these methods?

    Regards

    Jo

  • Hi jo

    welcome to the club and sorry to hear about your daughter

    the treatment for head and neck cancer is not easy..... But two years post treatment I'm here and we'll and writing to you ... Life is good

    i had daily session of Tomotherapy over 6 weeks and 6 all day chemo sessions

    I created a blog of what happened to me ... It might be of use to your daughter

    gammaraygary.wordpress.com/

    shout if you need to know anything

    vatch

     

  • Hi Vatch

    Tonight I have read through your entire blog and I can't tell how much all my own memory's of my journey came flooding back. I had my tongue op neck resection. Radio and chemo all in 2014 like you. All of the radiotherapy treatment completely burnt through my skin, but I continued with the aid of cling film! So painful too. What a year we both had,  but so far all is well with me too! Keep positive I really believe it makes your body stronger against this terrible disease. My very best wishes Carol 

  • Hi Jo Sorry I missed your post. But sorry for you and your daughter that she was not able to finish her course of treatment, which would have given her a fighting chance. Yes it is extremely unpleasant harsh treatment, the hardest task I have ever undertaken in my life, and I can honestly say that I would have abandoned treatment in the final week had it not been for the support of my family and the wonderful radiotherapy team who gave me every help imaginable. So don't be hard on her. Accupuncture and Chinese herbs may make her feel better in herself but cannot cure cancer. Even the Chinese attest to this, using modern medicine and treatments for serious illnesses but resorting to folklore medicine for minor ailments (probably because they are often cheaper). There has been much debate on this recently in China where a famous young actress Xu Ting just 26 died from cancer after choosing traditional Chinese medicine over modern treatment. The Daily Mail online and the BBC websites both did an article just this week if you are interested to follow it up. Your daughter must make her own decisions for her health and I wish her all the best of luck. Kim
  • Hi Carol

    Like you and Vatch I've also been through the neck dissection and radiotherapy treatment.  Still have difficulty in swallowing, some loss of hearing in one ear, very little saliva, oedema and stiffness of the neck and some loss of taste.  But have overcome speech problems, dribbling food down chin, and can eat most foods again. I can also raise my arm above my head it took six months excercises to get there. But the biggest thing of all is like you I'm still alive and kicking and really enjoying life. Kim