Not so cheerful update.

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Hello all.

My last couple of posts have been about my having to have a permanent PEG after treatment 11 years ago for cancer of the lower tongue.

I had just about come to terms with that and then  on Friday  8days ago I had an appointment with maxio facial to have a look at a tongiue ulcer that would not clear up. You can probably tell where this is going. The consultant was very straightforward and said he was pretty sure it was either the cancer back or a new one. Since then I have had an MRI scan, a CT scan and a tongue biopsy and I am awaiting the results and the outcome of the multi disciplinary team meeting next week.

I cannot fault the speed of the response, really quite unexpectedly remarkable and in an odd way comforting to be back under the teams wing but knowing that further RT is unllikely as I had a full dose last time and having already heard the "quality of life" term from the consultant it is also bit of a bolt out of the blue.

I was planning on retiring in May anyway so it looks like I may be bringing that forward.

So now I wait and try and keep busy. Hey ho.

JonH

  • Oh Jon. Thats not the news you wanted and I’m so sorry. You must be so disappointed with it all after being clear for so long  

    Fingers crossed it’s not cancer but if it is these surgeons are pretty slick and can work wonders  

    Lynn will likely pop on to give advice. She has had three major ops for oral cancer and done well through all of them. 
    Best wishes 

    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

    Community Champion badge
  • Oh dear John not the news any of us want to hear fingers x there’s an alternative the surgeon s are slick and there’s new things all the time 

    hugs Hazel x

    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  

  • Hi Jon

    I am so sorry to hear that you have a potential recurrence of cancer. I do hope the biopsy proves to be negative but it does pay to be prepared in case the results do turn out to be positive. It is great that your team is so proactive.

    I have now been diagnosed with 2 further occurrence of jaw cancer after my first diagnosis in 2013 when I was 59 years old and still working. It was 6 years after my first occurrence when I got my 2nd diagnosis. I was retired by then.This was a real shock to me as I had got on with my life and had put the cancer experience behind me. I found the 2nd diagnosis harder to take than the first one and went through a real down time for a while. You seem to be bearing up much better than I did at that time. However in the end it boils down to just having to put your head down and go for the treatment. It was the knowing what to expect, more radiotherapy and the impact on my life again that I found the most difficult. However I got through that experience and went on to live a good life again. When I was diagnosed the 3rd. time it did not have anywhere near the same impact as the second time. This was 3 years later.This time I took it in my stride and did not have the same pychological reaction and  got through the treatment quite well.  I had already pretty much adapted to the changes that the 2nd. op brought and thought with any further changes I could adapt  too and that is what happened.

    Here I am now living a very happy life and enjoying new experiences still. My life is slightly altered but nothing I can't work with. I still have regular check ups and can't fault my wonderful medical team. I trust them completely they have been so encouraging. Couldn't ask for better.

    You will get through this and come out on the other side. Your medical team sound great so put your trust in them.

    Sending you really positive thoughts at this time. It does play havoc with your emotions for a while but you do get there.

    Lyn

    Sophie66

  • So sorry Jonh to read of the potential recurrence, fingers crossed for a negative outcome of this. Sending you best wishes Tina x

  • Sophie66, you are so inspiring for anyone going through this!

  • Sorry to hear of your situation.  Wishing you all the best, it looks like your medical team are on the ball and will sort you out ASAP. Take inspiration from all on here and especially those who have gone through this multiple times and come out smiling, like Sophie66.  Good luck. x

  • Sophie66, you are so inspiring for anyone going through this!

    Lyn is an absolute inspiration on this forum. Macmillan gave her a special badge  ……. Hazel has one too 

    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

    Community Champion badge
  • Thank you for all your responses, much appreciated. I shall let you know the results when I get them this week.

    JonH

  • So sorry to read your post, can’t imagine how you must feel right now sending hugs Hugging 

  • Yes, special people these badge people! Thank god for them. x