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Skully47
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Really struggling today after a meeting with my cancer team , I have been diagnosed with head and neck cancer which has spread to my neck lymphnodes , had a pet scan 2 weeks ago and my specialist nurse has been away on annual leave so wasn't at my meeting today, the doctor I saw from my Ent team told me I would need an neck dissection to remove the nodes on the right side of my neck and it may cause permanent damage to my nerves that go,to my right shoulder and I may not have full movement in my right arm , this sent me into a panic as I do a physical job I asked if there was an alternative and why they have decided this as I thought it would be chemoradiotherapy treatment only which is tough as it is 

I was looking for some reassurance that I would be supported through the process but my nurse is away  who would normally talk me through it , when I met my oncologist he   Explained the need to do the surgery , I asked him about the immunotherapy trial which is being done at the moment and he agreed to refer me for it  but that has left me wondering will this cure the cancer and have I just delayed my conventional treatment by asking to go on this clinical trial , I am a nervous wreck at the moment and don't know what to do for the best 

sorry for the essay

 

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    Hi Skully

    Sorry to hear of your diagnosis. I have been through exactly this treatment. If you have a good surgeon you will be Ok, I did have some problems, I couldnt drink without dribbling, and it was difficult to swallow, but the speech therapist showed me how to overcome these problems through a simple set of excercises. The problem you mention about the use of your arm is due to nerve damage, the surgeon spent 4 hours isolating the facial nerve and other important nerves before performing the removal of lymph nodes. I did have some damage and I couldnt lift my arm even to level height. However with excercises given to me by the physiotherapist I now have full movement of my arm and shoulder. I too have an extremely physical job. Its your call but I would seriously consider having the operation, the next port of call for the spread of cancer from your neck lymph nodes is your lungs. It then becomes incurable. If you have any questions post them here and Ill answer as best I can. Kim

  • Offline in reply to kimchoson

    Thanks for the advice , I have decided I want the standard treatment and emailed my specialist nurse , she is out of the office until Tuesday so hopefully we can get back on track then , the original plan was to start the chemoradiotherapy end of April so hopefully this will still be doable I have had my kidney function test  and my dental check done , I only need a filling so that won't hold anything up , I feel such an idiot for being so scared and worried and wish I had asked more of an explananation from the surgeon , I had a really bad bleed when they removed my tonsils which added to my  fears I guess 

  • Offline in reply to Skully47

    Skully

    It is quite a frightening time, take it one stage at a time, I didnt have chemo so cant comment on that, but i did have radiotherapy to my neck and face it was a very difficult time especially the last week and the week after it finished. It took about 3 months after surgery to regain  full strength in my arm and shoulder and about 5 months till I had full mobility of my arm. However I was back working just 2 weeks after the operation although taking it gently at first. With hindsight it was probably too soon but as I run a small business didnt have the luxury of a few months off with pay. There are a few others on the forum who have had this type of cancer and I'm sure if you post any questions here, between us can give you some practical help and answers. Kim

  • Offline in reply to Skully47

    Hi Skully,

    There's no need to feel like an idiot, that sort of news knocks most of us for six and we either forget to ask questions we think of on the way home, or we forget half of what we've been told. 

    You can always ask your nurse by phone any of the questions you have, or leave them till your next appointment. I always find it helps to write my questions down beforehand and write the answers down during the appointment. It's amazing the number of things I've read whilst in the hospital car park which I didn't remember writing down! It's not just a senior moment thing, honest!

    Good luck with your treatment
    Dave

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