40% success rate

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Hi,

Has anyone else been told something similar, or is it just me?

I had a good outcome from treatment this summer. I'm back to work although I have tinnitus quite bad and still have swallowing and taste issues. I had an MRI and all clear last month. What a high!  My main concern now is, I was told for my type of cancer there is a 40% success rate. This translates to 40% of surviving 5 years remission, so 60% of death within 5 years. I need to have a detailed chat with my consultant. I'm back on the emotional rollercoaster....feeling a bit $h1t

They couldn't find a primary cancer so had to RT the whole area possible, just to be sure. I was told if the cancer came back the RT would not be an option as the area would be too scarred and not cope. The CT I had didn't fight the cancer but helped the RT, so if the cancer came back I guess the treatment option would only be surgery.

Now I'm thinking I'm over the first hurdle, but what does the next 5 years hold

History - Early 2023 I was diagnosed with secondary cancer (Squamous cell neoplasm) in neck lymph nodes. They could not find the primary cancer ( I had tonsils removed). In June - July 2023 I had Radiotherapy & chemotherapy (Cisplatin) treating my mouth and throat (a wide area), as well as Lymph nodes. October 2023 I got the all clear. Still have some long term side effects. 

Thanks

Mark.

  • Hi Mark 

    Who told you? Your consultant? 

    If it was I think he’s trying to tell you that if they can’t find the primary there is a chance that the treatment won’t find it either. 
    I would go back and ask for an explanation so at least you know where you stand 

    Stats are retrospective and generalisations. We are all individuals. Stay positive, consider yourself part of the 40% and wait to see what’s said. 
    It’s all you can do. We can play around with figures forever. The five year bit is a bit of an illusion. Oncologists use that as a time we are discharged from routine review. But we still remain on their list and we are more at risk of another cancer than if we hadn’t had the first one. But what is the point in spending your remaining years with the spectre of cancer sitting on your shoulder. It’s hard but the longer you survive the easier it gets 
    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

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  • PS if it was me I’d insist on a PET at a year 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
  • PPS have a look at this essay by Peter Harvey. It explains some of what we feel into recovery. 
    workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

    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
  • Hi Mark . As Dani says  we are all individual. Stats are just that statistics.  I know a few whose primary wasn’t found they are now well past the 5 year mark. Often consultants forget we are vulnerable during treatment  and blithely quote statistics.
    I’m in the glass half full side I don’t dwell on the what it’s. I am living my life none of us cancer or not none of us can predict the future. One life just live it. Yes ask for a pet ct scan at one year. The article Dani has highlighted is an excellent one. I still read it from time to time. 
    Hazel. xx

    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 Mark

    I am/was CUP after detecting SCC HPV+ in a lymph node.  Had tonsils and lots of lymph nodes removed in early 2020.  No sign of the cancer in any of that.  Aside from "just" surgery no treatment.  They guessed my immune system had dealt with the tumour and I was given as 70% change of return.  Roll forwards one year and a tiny tumour was found at base of tongue.  Did not show on scans.  6 weeks later when I went in for a partial glossectomy it had gone.  Same assumption.  Roll on to almost exactly 4 years after initial diagnosis and it looks like it has made a reappearance in the same spot.

    My decision each time, supported by the MDT, was not to have radiotherapy without and target or sign of the cancer after surgery.  There have been a few other scares along the way.

    As to your next 5 years, having lived with similar odds (but, I agree better treatment options) my advice is to ensure you religiously attend each follow-up (both my "real" tumours have been found by my consultant without me really knowing they were there).  These check-ups give you the best change of early detection and treatment.  Also, don't be scared to raise any concerns you have between appointments.  I had one serious concern and they had me in within 24 hours to look and assure me it was nothing!

    Your mind will run riot, especially in the near future.  But you will settle down to a life where you are wary of a return and not running scared of one, because you have a good clinical support network.

    Finally, and I think we all understand this, live life to the fullest extent possible as we don't know what is around the corner.  Be wary of a return, but don't let it rule (and ruin) your life.

    Hopefully time will minimise those long term effects.  I found 18 months was a good yardstick for me.  We're all here for you!

    Peter
    See my profile for more details of my convoluted journey