No "All Clear" after Treatment.

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I had a partial glassectomy in March.  I got the all clear that my mouth was cancer free, so all good.

However, I had several lymph nodes removed at the same time. These came back with cancerous cells, so had to have 6 weeks of Radiotherapy and Chemotherapy which was really tough.  I'm now 8 weeks post treatment and feeling much better after going through a hellish 8 weeks during and post treatment.  So I saw my oncologist on Wednesday and hoped I'd find out if I was now totally cancer free.  However I was informed that they don't do this with head and neck cancers. I was advised that the 1st 2 years I would be examined every 6-8 weeks and thereafter be examined less frequently for the following 3 years. I was a bit disappointed as I really wanted some sort of "closure".

Is this the norm for everyone?

  • Hi BVB

    The answer to your question is yes.

    Most of us have some sort of scan at 12 to 16 weeks. Usually PET or may be MRI

    We are monitored very closely for the first year with review intervals increasing thereafter.

    The best we get is no evidence of disease at check ups and complete metabolic response at scans.

    Recurrence is most common in the first year and by the time you get to two years your chances are excellent

    By five years we are usually discharged as needing no further reviews. Nobody pronounces us cured however.

    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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  • Thanks for that Dani.  Only difference for me is that I'm not due to get any scans. Oh well  just have to hope this first year goes well then

  • Hi BVB I di know if a few at my cancer centre who after treatment they too had chemo radiation for lymph node involvement they didn’t have scans post treatment either. None of ys get tge cancer free moment that the films seem to portray. The best we get is complete metabolic response. As Dani says reoccurrence s are most likely in that first year hence xxthe frequent check ups. At 5 years we get discharged . All I can offer is get on with your life and trust the treatment . I’m 4 years post radiotherapy and chemo and to br honest I don’t ever think about reoccurrence s. one life live it is my motto. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hiya

    ive not had a fU scan either, had surgery and Radiotherapy. Im being seen every 6 weeks, although worked out 12 weeks due to staff holidays/sickness. Im being fU for 10 years because of the type of cancer i have/had 

    Elaine 

  • Hi BVB09  I think we are all different post treatment and the clinicians approach our check-ups individually within the protocols of the hospital.  I had a post treatment PET scan at 6 months mainly because my cancer presentation is somewhat strange and I needed some reassurance.  Nearly 3 years after initial diagnosis I am on a check-up sequence that varies from 2 to 4 months.  Generally the physical checks and the scoping will detect any changes often before a scan will.  It did in my case.  At my last check I was told that they would probably never discharge me due to my strange presentation of the caner.  Personally I can live with that rather than being cast adrift in hope.

    Peter
    See my profile for more details of my convoluted journey