Stage 4 Cancer of tongue and lymph nodes

I’ve not had an opportunity to discuss a family members diagnosis with any medical professionals on my own.  I am trying to remain positive but no one has given any indication of what the odds are of successfully treating stage 4 tongue cancer which has spread to lymph nodes.   Surgery to remove the tumour is not an option. I would appreciate a realistic view on what the prognosis so we as a family know what to expect. 

Parents
  • I am in the same predicament, and have researched a lot online. My unfailingly optomistic oncologist has been helpful but perhaps not elucidated some facts fully. The trouble with HPV-driven cancer is that it is still being researched and argued about for clear categorisations and accurate prognosis - the US sites tend to be best. 

    I assume you know prognosis gets more favourable if your family member has never smoked (and failing that is at least an ex rather than current smoker), is HPV+, was not underweight at diagnosis, young (as in under 60), has a main tumour which is small (though with stage 4, like mine, it will be at least 4cm - mine is 7) and no nodal tumours which are over 6cm.

    The TNM staging system, introduced in 2017, is more accurate than the old stage 1-4 system, and likely to make your family member a stage III case, as opposed to a stage iv, assuming there is no distant metastasis. This lifts their chances of 5-year survival from about 39% to about 66%, though with the above factors to consider.

    Some studies say dock 2% off your chances for every pack year (20 a day for a year) the patient smoked, though that seems quite extreme. Being a women helps too, and caucasians do better than black people, though black people are less likely to get the cancer in the first place.

    I finished chemoradiotherapy ten months ago and am still clear but I am therefore in the eye of the storm. If this cancer comes back it tends to be fast and brutal: in first two years (well over 50% of cases of recurrence) and at least 85% deadly. By the third year you can relax considerably, and by the fourth you are definitely over 90% safe. Nobody is 100%... If it does recurr later chances of survival go up though it is not clear to what extent; from 15% to 30% at least.

    I wish you well,

    S

  • I'm sorry to hear of the position you are in and I'm so happy that you're all clear and hope this continues. My father sadly passed away. He developed a chest infection which developed into sepsis and resulted in his death in September of last year, the cancer was very aggressive and had spread extensively throughout his body and he was too weak after palliative chemo to fight off the chest infection.   I hope you have been able to enjoy the festive period with those who bring you comfort and joy. Best wishes for 2020 

  • Terribly decent of you to bother messaging, as my original message is long irrelevant. Very sorry for your loss, and seasons greetings to you; hope you are finding some solace in the march of time.

    I lost my stepfather to cancer 19 years ago (he was only 55) and found the grieving exhausting - goes on so much longer than I would have known. Untill you have lost someone you love, you really can't anticipiate the depth and length of the sorrow. I hope you are seeing some light now. In the latter stages - meaning at least a year after he died - it helped me to think how he wouldn't have wanted me to be sad. But every death and grieving is different.

    Healthwise I'm still in the clear, got a couple of nervy years ahead - and two teenage boys I'm nowhere near done raising...

    Stewart

  • Time is helping, thank you. It's still not easy. For most of my life my father was an alcoholic. His diagnosis was the only thing which got him sober. It was an extremely difficult time for the family however it was lovely to have our father back in our lives. I'm very grateful for the time I was able to spend with him. He was only 60 when he passed away.  Maybe if he had looked after his body better over the years he would have noticed the signs earlier and had his cancer treated and be in the fortunate position that you are in today. He was such a fighter and would not back down to the illness nor did he fully accept how ill he was. I held a Macmillan Coffee morning this year on his honour. It was lovely doing something so positive for such a terrible illness.  If you're struggling to talk to your family or have any concerns or questions be sure to get in touch with them, they really are wonderful. 

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  • Time is helping, thank you. It's still not easy. For most of my life my father was an alcoholic. His diagnosis was the only thing which got him sober. It was an extremely difficult time for the family however it was lovely to have our father back in our lives. I'm very grateful for the time I was able to spend with him. He was only 60 when he passed away.  Maybe if he had looked after his body better over the years he would have noticed the signs earlier and had his cancer treated and be in the fortunate position that you are in today. He was such a fighter and would not back down to the illness nor did he fully accept how ill he was. I held a Macmillan Coffee morning this year on his honour. It was lovely doing something so positive for such a terrible illness.  If you're struggling to talk to your family or have any concerns or questions be sure to get in touch with them, they really are wonderful. 

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