Radiotherapy after a neck dissection

  • 69 replies
  • 90 subscribers
  • 2172 views

Good evening all,

I had a neck dissection two years ago and turned down radiotherapy.  The cancer reappeared earlier this year and I have had a second neck dissection on the same side. Levels 1 through 5 lymph nodes have been removed as well as the salivary gland and some jaw bone and muscle. Now to the big dilemma, do I have radiotherapy this time.  Last time it seemed likely they had been able to remove all the cancer, this time it is almost certain that some small areas are still there

Is there anyone here who has had a neck dissection plus radiotherapy who is willing to share their personal experience of late or long term side effects from the radiotherapy?

Kind regards 

  • Thanks, Hazel. I must admit dry mouth is one of my dreads. I had it for 6 months years ago when I had a different cancer and wrote in my diary that I would rather have cancer! I know everyone adapts. It is whether, given the choice, you choose to. It seems a very common long term side effect. Im glad to hear you are enjoying life.

  • Thank you and I hope your recovery is good. This is my fourth different type of cancer so I have no fear of it any more. I dont lie in bed worrying, I sort of assume it is there somewhere playing hide and seek!   It will pop up again when I  least expect it!

  • Not too far at all. I am not trying to be dramatic but life experience has made me see that on occasion death is a preferable outcome to life. My father died a year after a cancer diagnosis aged 70. My mother died, also of cancer, aged 92. The last 10 years of her life were not good for her or her nearest and dearest. I would prefer my fathers death to my mothers given the choice.

  • Thanks. Im so glad all has gone well. I am in my 70's so my perspective is somewhat different. 

  • life experience has made me see that on occasion death is a preferable outcome to life

    I totally agree and I have made provision in that eventuality but please, before you abandon treatment can I just say that I was a little younger than you at 68 when treatment started. For me the first three months were tricky and the next three just building on my recovery but by six months life was good and worth fighting for. 
    You are in my thoughts as you decide 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Screech Owl

    I totally get where you are coming from, age and life situation after surgery for jaw cancer I decided after taking all into account, not to go ahead with radiotherapy.  I was 78 at the time, I am now 80.  (See my profile). My best wishes are with you whilst you make this very difficult decision.

    June

  • Thanks, June. I appreciate your response. I have lived and am still living the most amazing life and would rather it didnt end with years of discomfort for me and stress for my nearest snd dearest. I wish you well.

  • Thanks, Dani. I am glad your journey has been positive. I can see positives and negatives for both choices which is what makes the decision so difficult. I contacted this forum in the hope of discovering what proportion of people with similar cancers  had long term side effects from radiotherapy.. I now realise that what seems unacceptable to one person is bearable to others! I should have known that before.


  • Hello

    I’m really sorry that you’re in this position.

    Your dilemma resonates with me so much.  I agonised over this issue and came within a whisker of refusing adjuvant radiotherapy last year after a dissection to remove lymph nodes and surgery to remove the primary at the back of my tongue.  I decided to go ahead with the radiotherapy….although came close to reneging on that decision along the way..  

    My issues were very much the same as yours: the juxtaposition of quality versus quantity of life, which is exactly why this is so hard: firstly we’re all in the Rumsfeldian bind of not knowing what we don’t know about how treatment will affect us..and secondly what’s bearable if not acceptable to one may be anathema to another.  Bummer.

    For me, the first month after treatment was seriously not fun.  In many ways it was harder for my husband watching me struggling.   I don’t think the effect on those around us can be overestimated.  For my part, I was in severe discomfort and completely tube dependent for feeding and hydration (had been from week 3 of treatment) and very tired - but on the positive side, I was never in pain as a result of radiotherapy and did not need pain relief of any sort.  

    Fast forward 8 months after treatment.  The only real enduring side effect I have had has been  a dry mouth which has impacted my swallowing and eating.   Even with that, though, things  are getting a lot easier (finally!). I am now able to eat things I would not have even attempted 3 months ago. And I’m starting to be able to swallow some things without needing a sip of liquid to help it down.  This is for me progress..  I am confident there is significant improvement to come.  

    I get occasional mild lymphoedema which is just a nuisance while it lasts.  The only other lasting effect has been that I lost a lot of weight…size 10 to size 6…which was not ideal and it is showing no signs of going back on any time soon.  To be honest it doesn’t bother me that much and the opportunity to revisit my wardrobe was fun in its own way.

    When it comes to quality of life we decided that we were, as far as we were able , not going to allow our twilight years (I turned 70 this year and my other half hits 80 next ) together to be dictated or defined by the cancer.  It isn’t stopping us travelling and spending time overseas..or anything else we’ve wanted to do. Crucially it hasn’t deterred me from wanting to eat out. I was apprehensive the first time  but I have found that a quiet word and restaurants and cafes have been more than happy to help with smaller portions/extra sauce/serving a warm drink with a main course (sounds awful, but it helps!) indeed pretty much anything to make life easier. I have good and bad days, but the former are now outnumbering the latter by some margin.  My energy levels are high and I feel fine in myself and have done so for some months now.  But I suppose that perception of effect on quality of life depends very much on previous lifestyle and  expectation with respect to impact on that lifestyle and this will be different for different people.

    I’ve hesitated to post that my 3 month MRI and PET scans showed a ‘complete response’ which I take as medic speak for ‘it’s worked’.  I hope I’m not tempting fate.  Obviously there’s still a way to go, the next milestone will be the 12 month point…but my team has said that they don’t need to do further scans unless their monitoring throws up something untoward. It feels positive.

     I don’t know if any of the above is any help…but in response to your question, I am more than happy to share my experience if you have further questions.   Not an ideal medium….it’s a pity we can’t sit across a table and talk….but it’s the best we have.

    Sending best wishes for your recovery. 

    Liz

  • Thank you so much for sharing your experiences, Liz.  I am so pleased that you are progressing, albeit slowly, in the right direction and I am sure mental attitude is a big part of that. I shall bear all you have said in mind as I make my mind up.

    Kind regards