Tongue cancer prognosis

Hello Julie ju,

Thanks for getting in touch. My name is Megan, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

Welcome to the online community. I can see you have joined the ‘Head and neck cancer forum’ and hope you have been finding it supportive.

I was deeply saddened to hear about your son’s tongue cancer diagnosis at such a young age. As you mention although you do remain positive this is also a fearful time for you and I do hope you yourself are receiving support during this time.

I wish your son well in his ongoing recovery after treatment and do hope he is not suffering greatly the effects of head and neck cancer treatment. We do our utmost to make our services inclusive for all and he would be most welcome to contact us should he need our support. He may also be interested in knowing we offer free counselling.

As we are a charity, we do not have access to healthcare records therefore are unable to speak more specifically about a person’s care and outcomes. As you likely understand many factors can influence prognosis. However, we can speak more generally, and I do hope the information provided will be of use.

Cancer survival statistics are often measured in 1, 5 and 10 years. Under the paragraph ‘Living with uncertainty’ on Why some cancers come back there is explanation around risk of cancer recurrence. If a cancer is believed to have been fully removed or treated and a person is on surveillance the risk of recurrence is likely to be highest in the first 2 years or so after treatment. After 5 years, it is even less likely to recur. This could explain the uncertainty around 5 year, 2 year that you had mentioned although you would have to clarify this with the surgeon.

Cancer Research UK does have further information on tongue cancer including staging which you may find useful in reading. I mention staging as you explain that during surgery a further tumour was found at the back of the tongue in addition to a lymph node.

This may affect the definition of the cancer from being mouth/tongue cancer to an oropharyngeal cancer. The discovery of an affected lymph node is likely to have been the reason for upgrading his staging from a 3/4 to a 4. These details are likely to affect the overall prognosis.

Preferably with your son’s permission, we would guide you to discuss your question with the hospital team as these details may affect his prognosis and yet we cannot speak on behalf of the hospital team for reasons previously mentioned.

Cancer Research UK does also have general information and statistics on survival for mouth and oropharyngeal cancer however as noted, and at the time of writing this, these statistics come from America and are likely to vary from UK.

In addition, you may also wish to seek further information and support from Mouth Cancer Foundation, and your son may be interested in exploring Changing Faces and The Swallows Head and Neck Cancer Support Group.

I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Megan

Cancer Information Nurse Specialist 

Ref MD/A-MW