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When does the clock start?

YVONNECo
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Recently diagnosed with a brain tumour.  An unusual one apparently.  Looks grade 2or3 but molecularly a grade4.  Dr said it may take my life in 12 to 18 months.    Yet, we are doing radiotherapy and chemo for 6 weeks, then 6 months chemo... so pretty treatment to end of 2024.    So when exactly does the clock start ticking for those 12 to 18 months?  After treatment?   I had symptoms in November but had the tumour "ages" apparently.  Debulking surgery in Jan 2024...Grade was confirmed February 24... when does the countdown begin??    Although I am gonna do my very best to prove them wrong!! 

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    Hi Yvonne,

    Regardless of the cancer type, that particular clock starts ticking on the day of diagnosis. I’m confused by your numbers 2, 3 and 4. Staging usually goes from 0 to 4 and grading from 1 to 3.

    That said, life expectancies shared with patients are always based on averages and often ignore key factors such as patient age, levels of fitness (a factor affecting whether your body can cope with side effects of chemo and/or radiotherapy), co-morbidities (a lot of folk with cancer tend to be old, obese, diabetic, have heart problems, lung problems, strokes etc. 

    None of us are average and outliers (like me) are often excluded from the stats to avoid giving false hope. As an example of how accurate these prognoses can be, I was told 3 months to 2 years in 2013. I’ve also known people who were given 18 months but didn’t survive 18 weeks. It often feels like a cruel lottery. In my view, agreeing to treatment is like buying a lottery ticket.

    Good luck!
    Dave

    I

  • Hello YvonneCo and thanks for your post

    I am very sorry to hear about your recent diagnosis and the treatment you are about the start. This must be a very difficult time for you.

    I can understand you having questions but i'm afraid as we are not involved directly in your care we can't say what this 12-18 months may mean exactly for you.

    We have a section called survival for brain and spinal cord tumours on our website that explains the factors that can affect this. Things such as the type, size, grade and position of the tumour affects survival but so does the general health and fitness levels of the patient and the type of treatment a person can have, and how they respond to it. 

    Often when a patient asks how long they may have the doctors predict a time frame based on their experience of other patients who have had a similar diagnosis and treatment. Of course there are people who will live beyond this and others who sadly die much sooner. Do talk to your own doctor about this more if you want some more answers, although they may not be able to offer much more than they have already told you.

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Wishing you all the best,

    Take care

    Naomi

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