Newly Diagnosed -spouse diagnosed with Retromolar Trigone cancer

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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.

  • Thanks Dani for that encouring comment. I forgot to say that a piece of the tongue will also have to be removed as it has gone from the jaw over to there. They said it should not cause vast problems as it is only a small bit.  The team we saw were really excellent and did explain everything. Unlike Hazel though I am the pessimist out of the two of us and I always think are you just saying that to make us not worry or is it really true? I know I am my own worst enemy. Hubby is normally a lot more upbeat and practical but I could see him slump yesterday when they called us back in so quckly.  It is such a massive rollercoaster ride to go through for all of us in this situation.

    Jan

    x

  • Hi Immy I was concerned  about both of you pleased to say that you have popped back onto the forum as Dani said I believe in your consultants they know what they’re doing although sometimes you have to wonder whether they do. My Cancer first presented to me on the 14th of May and it was the 14th if of July before I start a treatment 63 days later, so as for time don’t worry. Take the 85% that you’ve been given as a positive note. Our surgeons are magnificent with  what magic they can do. 
    Keep in touch and sending hugs.

    Hazel 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 

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

  • Hi Jan. 
    at the start of mine they thought I had latent TB umm slightly wrong SCC squamous cancer a week later tgat floored me until I saw my oncologist and he said he was looking to cure me. 
    He did. Yes I’m the optimistic one Dani and I work well together.
    Hugs Hazel xxt

    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/

  • Jan. I have always been a glass half full girl. I say it in my blog and I add that even miserable people get cured, they just have a harder time of it. You can’t help the way you’re wired. 
    Cancer is a serious business. People die of it. You can be absolutely confident that I would never pull the wool over your eyes. I wound never give you false hope. That’s not to say that I won’t step up to give you some encouragement. Don’t try to second guess what might happen. I know that hard. I know personally how hard it is. The essence of preserving your sanity is to trust your team even if you don’t trust your body.

    They do this every day and they are good at it. 
    More hugs. 

    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

    Community Champion badge
  • es I’m the optimistic one Dani and I work well together.

    Yin and Yang. The stuff of legends. Wink

    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

    Community Champion badge
  • You two definitely work well together.  If I joined in with you both would have sacked me before now!  Hazel they also said that to us yesterday that they are looking to cure this cancer and told him he needs to concentrate on that message.

  • Ha ha Jan. you’re unsackable. When your oncologist says he’s aiming for cure ( I got that too) he means it. I’ve sent you a friend request so that I can send you a private message 

    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

    Community Champion badge
  • Hi Dani.  How do I do the friend request?  Thanks

  • Tap on my profile picture then on the plus sign top right 

    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

    Community Champion badge
  • Hi Jan Consultants don’t use the aim for cure lightly take heart from that. I’ll send you a friend request cas well.  
    hugs Hazel 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 

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