Officially 'Cured'

LeoS2323
LeoS2323 Member Posts: 160
edited March 2017 in Head and Neck Cancer #1

Hello Good People of CSN - I hope you are all fighting the good fight and winning!

Just to introduce myself as I haven't been on all that often for a while, I was originally diagnosed with mucoepidermoid carcinoma with unknown primary in March 2012 (not sure how they stage it when its in a lymph node but no primary and never asked). Had a neck dissection, tonsilectomy and a piece of my tongue removed.

When all of my removed junk came back all clear from the lab, my doctor recommended to hold back on the radiation as they couldn't find my primary (which should have been lurking in a salivary gland somewhere) whilst they scanned me regularly. They did it 3 monthly to start with to try to find the primary, then 6 monthly and finally annually for the last couple. The years have gone by and I had an MRI scan a few weeks ago which came back clear, and means that by our rules over here in Britain I am now offically cured, and will be signed off. No more scans or visits to the hospital - any further cancer would be a new one.

I was a strange case with no primary ever turning up - it was a bit weird. To start off with, I wanted to find it and deal with it but as time went by I realised that I might just get away with it. So here I am officially getting away with it. I must admit I feel a bit of 'survivor's guilt' when I read about the tough times people have here with the radiation. But then getting cancer out of the blue at 33 years old having lived a pretty healthy life (and having to have some tough operations) isn't exactly a walk in the park!

I do consider myself lucky though, and being able to see my son and daughter who are now 6 and 8 thriving in their young lives and in school is the greatest pleasure of all. Everyone on here was wonderful when I was going through my own journey - my 'bus mates' Phrannie, Guzzle and Ditto and the terrific people like skiffin and tommyodavey who were always around with good advice and encouragement. It is a fantastic community and one on which I relied greatly at a difficult time.

Thank you so much to everyone who helped me.

I'll keep checking in now and again, and wish you all the best of luck on your own journeys.

Leo

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited March 2017 #2
    5 years, very good

    Congratulations!

    Matt

    cu

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    #3
    Congrats.  

    Congrats.  

  • LeoS2323
    LeoS2323 Member Posts: 160
    edited March 2017 #4
    Thanks

    Thanks guys! Cool

  • Captain Australia
    Captain Australia Member Posts: 21
    edited March 2017 #5
    Live long & prosper

    I see a child in your profile picture .. for me, that's the most distressing thing about getting cancer .. the idea of abandoning my children (especially as one of my three boys is autistic and really needs me). 

    The only thing more distressing is a child with cancer ... I remember in the hospital for chemo or radiation, I'd occasionally see a young child being wheeled around in a bed and I'd feel a kind of futile anger, a sort of incredulity like seeing something offensive, and I'd think "C'MON!  FFS, look, give *me* the extra cancer, OK ?  I'll take it, just leave the KID alone !!"

    Congrats on beating the disease, live & be happy.

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #6
    Not Me

    Hi Leo,

    Good to see your post here as we shared the same kind of C. My surgeon told me it won't be until 15 years has passed before he says "You're cured". Like you, I was expecting the all clear after 5 years. He said the reason for that is due to it being such a slow growing cancer. In my mind I know it's gone but I'll do what he says.  You really lucked out by not getting rads. It was my deccision to get them and I don't regret it yet. 

    Good health going forward and congrats on being released.

     

  • LeoS2323
    LeoS2323 Member Posts: 160
    #7
    Captain Australia said:

    Live long & prosper

    I see a child in your profile picture .. for me, that's the most distressing thing about getting cancer .. the idea of abandoning my children (especially as one of my three boys is autistic and really needs me). 

    The only thing more distressing is a child with cancer ... I remember in the hospital for chemo or radiation, I'd occasionally see a young child being wheeled around in a bed and I'd feel a kind of futile anger, a sort of incredulity like seeing something offensive, and I'd think "C'MON!  FFS, look, give *me* the extra cancer, OK ?  I'll take it, just leave the KID alone !!"

    Congrats on beating the disease, live & be happy.

    Agree on the Kids

    Hi Captain!

    Completely agree - I found I wasn't scared of the dying bit as such, but the thought of not seeing the kids growing up and being able to be there for them was what really played on my mind. I didnt want to miss out on all of that - it gave me a lot of determination though.

    Kids having cancer is just the worst thing imaginable. When I was on a general cancer forum here in England there was a post from a Mum who was helping her 18 month old child through chemotherapy. That really is unimaginably awful, just wrong on every level.

    I hope you are doing OK yourself!

    Cheers

    Leo

  • LeoS2323
    LeoS2323 Member Posts: 160
    edited March 2017 #8
    tommyodavey said:

    Not Me

    Hi Leo,

    Good to see your post here as we shared the same kind of C. My surgeon told me it won't be until 15 years has passed before he says "You're cured". Like you, I was expecting the all clear after 5 years. He said the reason for that is due to it being such a slow growing cancer. In my mind I know it's gone but I'll do what he says.  You really lucked out by not getting rads. It was my deccision to get them and I don't regret it yet. 

    Good health going forward and congrats on being released.

     

    Hi Tommy

    Great to hear from you - glad it seems you are doing really well!

    Its interesting how differently our doctors look at our cases when we both had MEC (I'm going to use the past tense there Tommy, for both of us!). My doctor has seemed pretty confident about it being gone since I got to 3 years or so, and he definitely says thats me done now (he said anything that happens after the 5 years would technically be classed as a new cancer). Because I was 'unknown primary' they didn't have anywhere to point the rads basically!

    In many ways Tommy your doctor keeping his eye on you for such a long time is really good.

    My wife would have them scanning me for the next 30 years if they would do it for us!

    Take care my friend and keep well.

    Cheers

    Leo

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