Ssc in lower lhs jaw and revovery

FormerMember
FormerMember
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Hi

Haven't been here in a while but I'm struggling. Diagnosed with ssc in lower left mandible December 2018, T4. Had 3 lots of tpf chemo and 35 radiotherapy sessions with chemotherapy 3 times during radiotherapy, the last being early May. Have been told the radiotherapy still works for 4 month after last treatment, so i won't be aware of results until late August following mri and ct scans. 

Jaw was very swollen and tense before diagnosis as i had tmj. In a nutshell, my jaw still swells but I'm paranoid if it's the tumour fighting back or just tension. Waiting another 7 or 8 weeks is pretty scary. It's a tough cookie if it is fighting back so early with what's been thrown at it in my opinion.

I obviously want this to be curative (which is the aim of the treatment) , not palliative. I'm 50 for heaven's sake, never smoked and drank little.

Any words of wisdom or shared experiences most welcome.

Thanks

Alan

  • A couple of things, did you have a neck dissection, if you did the swelling could be liquid retention, I was told that the scar stopped the fluid from getting away, if so you can gently massage it down. If I get tense my neck gets very tight and can be painful, I wouldn't say that it swells though. I am 4 1/2 years in and a different sight so not the same but just saying that things happen and don't mean you need to worry just mention it on your next visit or phone your nurse if you have one.

  • FormerMember
    FormerMember in reply to Ron51

    Thanks Ron

    I didn't have a dissection, and indeed I'll mention it at my next appointment next Thursday.

    Thanks for your positive words

    Alan

  • Hi Alan , I would suggest you speak to your consultant about this because if you feel that your condition has not improved or got worse then maybe a scan would put your mind at ease . It is true that the radiotherapy continues to work after the course has finished  so have a chat with your consultant to ease your worries . All the best .

                                                                                                             Chris 

    Its sometimes not easy but its worth it ! 

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  • I had almost exactly same thing in July last year.

    Operation to remove half of lower left jaw, reconstructed with bone from leg

    I did have a full neck dissection though from just below ear all the way round and through centre of lip.

    I had swelling for a long time, from day after operation all the way through my radiothepy sessions but swelling was in upper neck rather than by jaw

    3 weeks after radiotherapy I started getting swelling more between cheek and jaw which felt the same as my original cancer and I was convinced it had come back

    After more scans and an agonising 2 week wait I was told it was just an infection and lymphoedema due to lymph nodes being damaged.

    Never been so relieved to be told I have an infection Slight smile

    I still have both swellings now but they are slowly going down with massage and if I wear a compression garment at night it goes right down

    basically lymph fluid that isn't draining away properly

    Made it to Christmas, made it to my birthday, had a nice summer, made it to my 2nd (and 3rd) Christmas now writing a blog about my treatment - https://www.1in1440.co.uk/april-2018-you-have-cancer/
  • FormerMember
    FormerMember in reply to Penrod

    I had exactly the same surgery 9 years ago and experienced the same side effect. It does subside with physio treatment but it is a slow process as the lymphatic fluid has to be re-directed to alternative nodes. It took about a year but I no longer suffer lymphoedema.