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Tonsil Cancer

Ally.
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Hi everyone. New to this , hoping for advice and support.
My husband was diagnosed yesterday with right side tonsil cancer that has likely infected at least 2 lymph nodes either side. He had no symptoms until June this year when he had a sore throat and found 2 ulcers that haven't healed . GP was adamant it wasn't cancer but eventually referred to ENT so we sought private consult. He will require all the tests to stage etc and we are in disbelief quite honestly and terrified. With regards to radiotherapy do all patients normally require a feeding tube ?. I have read you can still eat normaly as well ?  Thanks all, Ally x

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    Hi Ally.

    First of all, I'm sorry that your husband has received this diagnosis. You hear Cancer and it scares you witless!

    I was diagnosed last year with P16+ Tonsil Cancer. I finished treatment later last year. From March time till June I was pretty well laid up! I received 6 weeks of Radiotherapy and like because your husband I had Lymphatic involvement I also received 2 doses of Chemotherapy. (This was post surgery to have the nodes removed)

    Firstly. Have the guys who have diagnosed him mentioned if the Cancer was P16+ (HPV+) if so this believe it or not makes things alot better (the HPV Status makes it more treatable and more likely to be cured.

    Secondly, the feeding tube I would ultimately say most do.. some don't but what I would suggest ultimately if your team suggest having one then take them up on it. There's no guarantee he will have to use it. But it's better to have it and not need it than to need it and not have it.

    Side effects vary from person to person. A few on here have blogged their journey. I personally had an NG tube and was using it for about 10 weeks until my swallowing returned to a point to eat basic foods again. I just then continued to push and did my physio as they told me. I still have a few issues swallowing and some taste changes but trust me. He will learn to get around it.

    It's beatable. I have done it and many on here have also.

    Best of luck and love!

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    Hi Ally.

    Sorry to hear about your husbands diagnosis, his experience so far sounds very similar my own, I was first diagnosed as tonsillitis September last year then after 2 months sent ENT to find i had a cancer on my right tonsil which had effected a lymph node. 

    I am now 16 or so weeks after treatment ended and would say I feel about 80% of normal.

    This is a brief description of my experience of what and when things happened, it may help you understand what may happen.

    First thing was scans MRI and CT, then in November i had a tonsillectomy which was painful but didn't last for long.
    Next was a meeting with Oncology for treatment plan where it was suggested I have a PEG (feeding tube) fitted, I was very sceptical but persuaded by consultant and it turned out to be the best decision I made as it was a godsend for 8 weeks when I really struggled to swallow.
    The procedure for PEG tube is uncomfortable but quick (in and out in a morning) It takes a while to get used to and is annoying, but after a time you grow used it and it is a real life saver if as I couldn’t you can’t swallow. If you never use it then all is good but believe me give yourself the option!
    Next Dentist they will remove any bad teeth ( I got lucky mine were ok)
    My treatment then started in April 6 weeks of radiotherapy to both sides of throat and thorax (down to my collar bone I think) concurrent with 6 doses of chemotherapy.
    I wont sugarcoat it the treatment is not nice but the prognosis is generally good.
    The first 3/4 weeks passed with no real problems I could eat/ drink etc. the last 2 were very uncomfortable I could not swallow and suffered with a lot of mucus which is not painful but is debilitating and uncomfortable.
    I was taking pain killers and would always try to eat, mostly unsuccessfully , my throat was very sore and this did not improve until 6 weeks after I had completed my treatment.
    I spoke to quite a few people who were going through similar treatments at the same time and everybody has different experiences but every one used a tube at some point to eat.
    I was at my worst for the 4 weeks after treatment (I think I had kidded myself I would be ok now treatment was over)
    Once I started to recover I really noticed everyday improvements I am now eating anything (slowly) my mouth is dry but improving and my taste is recovering.
    The treatment can be brutal (your consultant will tell you this) but your husband will get through it and recover.

    My advice from my experience is do the mouth exercises (they really help after treatment finishes)
    Have the tube. you will be thankful.
    Take painkillers to keep eating for as long as you can.
    Talk to other patients having the same / similar treatment you are not suffering on your own.

    I got through it and so will your Husband.

    If you need any more info from me just ask, it is scarry but you will come out the other Side!

     

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