A few days ago my lovely husband was diagnosed with mouth cancer in the Retromolar Trigone region. There seems to be very little information on this type of mouth cancer other than medical which use terms which are difficult to understand. Has anyone else had experience of this type of cancer?
We are still trying to process the information we have received from the hospital but regardless we are terrified. They say they cannot tell us the staging at the moment until he has his CT and MRI scans which are next week and then we go back in for the results the following week. The consultant said that on an initial look he cannot feel it in the lymph nodes of the neck but obviously the scans will show what is there for definite. He said whatever the staging the treatment will require a major operation and reconstruction of the area.
We both just feel terrified and are living in this other world. We went for a walk by the sea yesterday to get out of the house but it didn't enjoy it like we normally do. We cannot stop thinking about. No matter how hard we try the mind just keeps going back to the cancer. The first night we didn't really sleep at all. Last night we had a bit more sleep but both of us kept waking up throughout the night.
I need to be strong for my partner but how I am going to get into that frame of mind I have no idea.
I would love to know what anyone else knows about this particular cancer and how they coped.
Thanks to all who can offer some information.
Hi Hazel and Dani
Thanks for the kind invite you sent on messages. Obviously you will see by the last message on friends I am a newbie to friends request set up and respond. One of the messages I was unable to reply to as that one said cannot reply as yet as being checked by moderator. If you are ok with it I am fine with this forum. I think it is better suited to my questionable technical skills!
Jan
xx
No problem. The invite is open should you ever need it.
I have no idea why the mods are suddenly checking PMs.....they shouldn't be.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
No problem will keep the friends invite open. Feel free to chat on here xx
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
Hi John. Have you seen your speech and language people plus dieticians. You should still be being seen by consultants every 6-8 weeks in the first year. Are they aware of your issues theres swallow tests that can be done ti check how your swallow is. I found in the first year I always had a warm drink on hand ti aid food going down. Gravy sauces were part of my meals for a long time I’m now over 4 years post treatment and apart from spicy theres very little I can’t eat.
will post a link ti a cook book by a fellow sufferer.
Hazel
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
I have had swallow test and they say its ok
But I choke on food and it comes up through my nose making me snezz
I have lost 5 stone
Hi. Your swallow is patently not OK. My advice would be to contact your CNS and tell them you are struggling.
Are you doing your swallow exercises?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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