Newbie. xx

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Hi, I'm new here. I was diagnosed with Cancer in situ in late 2023 after months of hoarse voice. MRI did the Camera down thingy and I underwent Laser dissection. At a 'check up' appointment in November 24 the Camera discovered another area of concern and I underwent Surgical biopsy on January 2nd. Then.....Nothing. I left messages all over the place but sadly no response. The biopsy result 'appeared' on my MyChart in February which stated worryingly 'at least squamous cell Carcinona in situ'.. After lots of leaving messages etc my husband eventuaally contacted PALS and they got me an appointment 2 weeks ago - which turned out to be with the wrong department! However, this Consultant sorted an appointment with the 'correct' team a few days later (Last Thursday to be exact) He did the 'Camera thingy' and discovered that since by biopsy in January the lesions had spread from a single small spot to a line right along my vocal chord (He showed us the photo/video). I think he was surprised himself at the speed of the spread and is sending me for scans this week. He suggested probably radiation treatment which I'm loath to undergo after reading here and on other forums and also my own experience of caring for relatives with Cancer. Has anyone tried immunotherapy in stead? Or photodynamic therapy? Or Robot assisted Radiotherapy or Surgery? Love and hugs xx

  • Hi  

    My cancer was at the base of my tongue and I had six weeks radiotherapy. It is a real challenge but doable and life saving.

    Six years later I am fit and well with only a slight dryness in my mouth at night to remind me.

    Have a word with your consultant. Immunotherapy is unlikely to be offered to you without further tests to see if the cancer might respond. Even then the response rate is only around 15%

    I can't help with photodynamic therapy I'm afraid

    If you want to consider less invasive surgery than a total laryngectomy maybe seek a second opinion? The surgeons at the Royal Marsden are pioneers in fancy laryngeal surgery. That might be your first port of call

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • My husband had chemoradiation for vocal cord cancer last summer. He coped really well with this and was able to carry on eating and drinking throughout. I know some people do get it worse but it is worth it.  

    Take care

    Jane

  • Hi JaneO.

    I'm so pleased your husband is doing well and fingers crossed the trend continues.

    My H also got through 30 fractions of RT pretty much unscathed compared to others.  He was able to eat and drink throughout and didn't need any painkillers.  It's only now, almost six weeks post, that his appetite has dwindled somewhat but he's ploughing on.

    He had a very large tumour on his larynx, so it was removed prior to RT.  He didn't need chemo and the RT was given to hopefully mop up any remaining cancer cells after his surgery, so we definitely think the treatment was worth it too.

    I like to think the gods were being kind to him, by giving him a more gentle ride through those six weeks, as the forever loss of his voice was traumatic enough!

    Either that or he's one tough cookie, cos however much I asked (nagged) if he was in pain, he always gave me an emphatic NO!

    Take care all.

    Gill xx 

  • Hi Gill, it's great that your Hubby also faired well during radiotherapy. I'm sorry to hear he has lost his voice, that must be hard.                                                                                                                                                                                                    Your H is only in the early stages of recovery. Mine is 8 months out. We can't believe that it has been a year since that awful day when we were told his sore throat was cancer!

    On the whole, life is good now. He suffers from radiation fatigue but is back to work .

    Good luck to you and your hubby. I hope the rest of his recovery goes well

    Jane x

  • Thank you so much, Jane.  I really appreciate your good wishes.

    Although only 60, H has opted for ill health retirement so won't be returning to work.  His disability would make a return unfeasible as things stand 

    But hey, onwards and upwards.

    Take good care of yourselves.

    Gill xx