SCC right buccal mucosa

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Hello everyone, I noticed that there isn’t much info related to buccal mucosa SCC at stage 1 with no spread (thankfully) to the lymph nodes - so here goes regarding my experience! I am in my 60s and had a white patch on the inside of my right cheek which my dentist treated as a type of thrush. This was in 2019. Then lockdowns came and I didn’t get to see my dentist for almost 2 years. Then the white patch became a mouth ulcer which wouldn’t go away despite treatment by the dentist (mouth washes) so finally last November I was referred for a biopsy which occurred 10 days later. A week after that, just before Xmas, I was told it was cancer and I would need an MRI and CT scan to see if it was in my lymph nodes. Great relief at the end of December when I was told no spread and so was lined up for an operation to take out the cancer in my mouth. This took place at the beginning of February. The NHS Oral & Maxillofacial surgeon made a wide excision and applied a temporary surgical pack, which I tried to keep in place by eating really mushy food and eating on the left side. I did salt water mouth rinses 4 times a day and the sutures dissolved just over 2 weeks later. Whilst this all sounds very straightforward, I have to say it hasn’t been a very nice experience and the swelling and scarring is very painful. My doctor said the two worst places are the mouth and “down there”! I was on sleeping tablets, morphine and ibuprofen (with laxatives) for the first 2 weeks, paracetamol thereafter I was absolutely exhausted all the time. Eating was a necessity, not a pleasure, and I lost over a stone in weight. I have to keep opening my mouth as wide as possible to prevent the scarring closing my mouth opening - although my husband probably wouldn’t mind! Recovery is very slow and talking too much aggravates things. I am normally on the go all the time but have had to listen to my body and slow right down. I think it will be several weeks until I am anywhere near to normal. I have been able to clean my teeth normally now and eating less mushy food. Anyway, that’s my story. You‘ll be pleased to know that they got it all out and so from hereon I will have meetings with the NHS surgeon every 6 weeks 1st year, 8 weeks second year, 10 weeks 3rd year, 4 monthly 4th year and 6 monthly 5th year.If anyone has any questions, please feel free to ask.

MacMillan have been fantastic and they are currently funding for a year, as a trial, the most amazing nurse who has been an incredible practical support both in terms of getting pain relief quickly from my GP and visits to check on progress and kept my morale up as much as possible. I have also had a buddy and counselling via MacMillan, when first diagnosed, which has been an enormous help. Thank you so much, MacMillan. I hope to give back in the not too distant future with fundraising etc. So grateful. 

  • Thank you  

    Thats a very useful post. Sorry that you’ve been through the mill but good news that you’re coming out of it. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Hi Raewyn Thank you for post it’s great to hear you’ve come through it and onwards and upwards from here. It’s good to have a comprehensive post in one of the rarer cancers for others to refer too.

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hello Raewyn,

    Great post and thanks for sharing your experience, love the humour too! So good that your stage 1 had not spread, what a relief for you. Wishing you a full recovery and good luck with all future appointments and the MacMillan support which sounds wonderful. x

  • As a side note, one thing I didn’t get told, but know now, is that I have to massage the scars in my mouth as underneath one scar in particular there has developed a hard lump which is uncomfortable and impacting the nerves. So massage the scars 5 times a day minimum once the mucosa has formed over the surgery area. The clinical nurse has also put me forward for photobiomodulation. Usually this is for neck lymphoedema but may help in my case. I’m feeling hopeful enough weather wise (and for my mental health), to have started vegetable seed sowing again. It lifts me up to get outside and think about the future.