Angry!!!!

I was diagnosed with a squamous cell carcinoma on my top lip in December 2014.

As treatment options I was given radical surgery and reconstruction  or a localised type of radiation called Brachytherapy. 

My ENT Dr's explained the surgery , which would have taken over half my top lip and left me with numerous problems with eating and speech. 

I  went to visit the radiotherapy oncologist who explained about the brachytherapy therapy  , which entailed 2 catheters placed into my top lip and high dose radiation delivered directly to the tumour twice a day for 5 day. Aesthetic and functional results are good. 

After weighing up my options I went with the brachytherapy and was treated at the end of January 2015.

The burns after were painful and looked really bad and by July my top lip still hadn't healed. My radiation Oncologist started to suspect a reoccurrence and persuaded me to have my lip biopsied again , however as the ENT Dr went to put the local anesthetic into my lip I just went into panic!!! I refused the biopsy.

2 months later next follow up visit with the radiation Oncologist , the lesion still hadn't healed , again the RO tried to persuade me to get it biopsied  (they knew the story of 2 months before)I agreed to try again , but again freaked out! (Yep, upshot is I've got a serious phobia of needles in my face.......bummer, when you've had oral cancer!!!) 

The biopsy was done a week later under a general anesthetic.  

Anyway. ...The biopsy, luckily, came back negative and after a few more months my lip cleared up. (Only took a year)

As is was the aesthetic results for me weren't good (I was 43 so yes it mattered) and I was left with a huge gap in the middle part of my top lip. (Looked a bit like I had a cleft lip)  

I went to 3 different hospitals to get opinions for the reconstruction of my top lip . It was reconstructed using a lip switch procedure called the Abbe flap , where they took a bit out of my bottom lip and attached it over the defect on my top, the flap has to remain attached for 3-5 weeks for the circulation to develop, meaning literally I have my lips sewn together for 5 weeks! !  Then a second operation is done to separate the lips. This technique is again supposed to have excellent aesthetic results!!!

Apart from when it's done on me!!!!!

I'm 4 days post op but can already see that the results aren't going to be good, it's all lop sided, I have a gap on the otherside ,

I can't smile, but that might not be permanent  ......I guess it is only 4 days!!!  But the world is very sad when you can't smile!

It's all rather ironic that I avoided the radical surgery that would have caused so many problems. .....just to have them anyway but giving myself an extra year and half of pain and misery!!!

And I can't keep back the anger and depression. ...............Am I now just destined to have a hideous mouth???  How do I go forwards disfigured? ??  Who's going to employ me???? 

I don't even think I can trust any more Dr's asI feel I've been misinformed time and time again!!

Thanks for reading if you got this far!!!

  • i dont really no what to say to you but i have been diagnosed with kidnry cancer and apparenntly it has gone into my lung i find them slow i still have had no treatment anyway what i want to tell you is my husband had his whole bottom lip bit off 20 years ago and he was sent to winston hospital for reconstruction and the outcome was fantastic you would not no that he had the  opp ask someone about winston hospital i hope this helps you and the anger will use all your energy i hope it helps x

  • Stops61, 

    Sorry about your diagnosis, sending you prayers and positive energy!  

    Thanks for the info on your husband , glad his reconstruction had a good outcome!  

    Maybe mine will too and I'm just on a downer???!!!  

    But everything I've had done has just had bad results ,  (but yes I'm cancer free , so I can pull out something positive)  

    Maybe I was hoping for too much???? 

    Never been a vain person......... but when it affects your face, it changes many things including how people interact with you? 

    Where I liveI'm not eligible for any benefits so need to look for a job, but who's going to employ me?? 

    As I said , I guessI'm just on a downer!  

    Big hugs to you , hope treatment starts soon for you! 

  • Hi Sissi,

    I'm not surprised you feel angry - anyone in your position would be! 
    Great news that you're cancer free - I just hope you can get the other issue sorted out too,


    Best wishes
    Dave