Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Living with extensive post surgery effects

Pobby
Posted by

Hi Everyone

I joined the group about 3 months ago but have been 'under the radar'. In brief, I'm struggling very much with living with the results of treatment. My SCC (to lower lip) recurred about 5 times. I ended up with most of my lower teeth removed, a large section of mandible replaced (with fibula) and radio to 'mop it all up'. 

I guess I'm one of the lucky ones, 2 MRI's have confirmed no recurrence and I'm now not using a feeding tube (liquid diet). 

However, I am struggling very much with how I look, people staring etc. I'm due for an 8hr op in September when some forearm will be taken to try to produce me a new lower lip (there's nothing there now), then teeth implants when that op has all healed.

I've lost lots of weight, dribble constantly and my speech is very impaired.

Help! How have other people coped who've experienced what I'm experiencing now? I'm having counselling but that seems of limited use. All answers very welcome.

Many thanks all, Jon 

Pobby
KTatHome
Posted by

HI , I’m sorry to hear your struggling at the moment and have another op to go through, it’s good news there is no recurrence though but it’s sometimes difficult to celebrate the wins, or is that just me. I haven’t been through anything you have, my only surgery was along my pant line so is well and truly hidden! 

I noticed your unanswered post though and it brought to mind the May skin cancer awareness post, I don’t know if you read it ? 

https://community.macmillan.org.uk/blogs/b/community_news/posts/everything-you-say-describes-how-i-m-feeling---skin-cancer-awareness-month

Or if you had a look at changing faces that was mentioned? https://www.changingfaces.org.uk

I just thought if you missed it it might be of some help to you.

best wishes

KT 

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

chris2012
Posted by

Hello Jon, I had lower jaw cancer and my lower jaw bone was replaced with a bone from my leg , I lost all my teeth on the lower jaw except one . My reconstruction was all done at once and thankfully my lip was ok so they could still use it to patch things up, they did use skin from my thigh and stomach for the bulkier bits i.e gums .I did not lose any weight as  I was only 9 stone then so it was easy to pile on the pounds , I ended up 10.5 stone which is my ideal weight ,in my opinion , I still dribble as its hard to get a good lip seal due to the lips not meeting together , plus having no teeth does not help . I was just improving my speech through the help of a speech and language therapist but I had to have my voice box removed due to cancer , so im sure once you recover from your op they will be able to help you out , if they can sort a lip out for you this will help with speech and dribbling if all goes to plan.

                I always give honest answers with a positive view on things , I had floor of the mouth cancer with a full neck dissection in 2008 where they done skin grafts etc , the results were good and you could hardly notice the difference in my looks .Then came along my lower jaw cancer 2009 which again went ok but my mouth and chin did look different ( plus no teeth at this time ) . Once all was healed I had implants fitted then dentures that clipped on , this did make me look a lot better and happier but my new image was a fair way of from how I used to look ( only the lower jaw line ) but I was happy with what they had done as I know they had done their upmost to try and make me look as good as possible , so I have no complaints . I have never worried about people staring at me and leave quite a normal life , on the whole most of the public are very good and I have never had anyone be nasty towards me , people look but that is understandable as im sure I would do the same . What makes it even more testing for me is that when I had my voice box removed  (laryngectomy ) in 2010 , so I now have a stoma (hole ) in my neck through which I breathe , the stoma is covered with a filter . So in a space of three years my facial /neck feature changed quite a bit but again I have had no bad comments and still go out shopping ,driving ,walking my dogs etc . 

         Im positive your team will do their upmost to produce a great looking lower lip and you will feel less conscious about what people think , like you I had counselling as it can help . Wishing you all the very best for you next operation and hope it brings great results . Take care .

                                                                 Chris 

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