Tongue Cancer ; Newbie

Hi Catmarel and welcome.

I had cancer at the base of my tongue and I am nearly four years clear of treatment, but my cancer is not quite like yours

There aren't many patients here with the sort of cancer that you have which is different from the lymphoid type that you get in the oropharynx.

I'll tag a friend who had part of her Tongue replaced by a graft Panch I'm sure she will be along soon.

If you put Hemiglossectomy in the search at the top there are a few posts in the last year. One of the members may still be here on the forum to reply.

There is a peer to peer support group called Young Tongues you could consider joining. This is their website. You'll find a link to their very active social media pages Young Tongues Global

Wishing you luck when you get your results and do let us know how you get on

Hi Catmerel welcome from me as well. I too had orapharangeal cancer which for me was tonsillar. The site Dani has directed you to is a very good one for cancer if the tongue. Pop back on when you know more. If yiure unlucky enough to need radiotherapy can help with tips on that. Yiur head will be in a whirl once you’ve treatment plan things do get clearer. 
Hazel x

Hi there.

The whirlwind happened to me just over 2 years ago - in deep lockdown.

I won’t pretend that this is an easy process but it is absolutely doable!!

Please feel to ask anything you’d like to. It’s a crazy learning curve as much as anything else.

If you find the website of the group that Beesuit mentioned and then join on a well-known site, you should be able to chat to we’ll over 200 of us, nearly all of whom have been through surgery.

I’ll Inbox you too. No question too daft!

Thank you all for your replies and the warm welcome . 

My cancer is on the right hand side of my tongue and underneath at the back, it's also in the gland on the right hand side of my neck according to some of the results i've had back.

I've had previous lung problems {Fungal lung infection & COPD} so the consultant asked for an MRI of my chest and a lung function test to see if i am fit enough for an op. the MRI showed a 'nodule' in/on my left lung so a PET scan was done last Saturday, just waiting for the results of that, then things will move forward. Just so, so hoping it hasn't spread to my lung. But... my Dad has a nodule on his which is benign and not doing anything, so i am hoping mine is the same, i also would have thought if it had spread it would be my right lung not left ???  I will definitely give that site a look. Again thank you all 

Hi and welcome from me.  Your site is broadly similar to mine.  I had one lymph node with HPV+ SCC all the rest removed were clear, tonsils were clear and a tumour in my tongue disappeared.  That was nearly 3 years ago and I only had surgery.  I am in for a panendocopy tomorrow to look at some lumps and bumps on my tongue in a similar position to yours.  Good luck with your lung problems and I hope they do not impact on your ability to have treatment for the cancer.

Thank you, and good luck for tomorrow I hope it all goes  well 

Hi.  My name is Ruth and I threw in the Babe because Ruth was taken and the chocolate bar is good.  

I just got my diagnosis on Friday and go to see the Oncologist next Friday.  I have cancer on the very back of my tongue too — went to figure out what the mysterious lump was in my neck and that’s the results.  

I started a blog here a day or so ago — title is Well This is Rich — just because I couldn’t think of anything wonderful and needed to write 

The best I can describe my “symptoms” is it feels as if I inhaled cat fur. A lot of it.  

Apparently, shortly after next Friday, I’m to start radiochemo therapy and I’m petrified.  I’m the sole carer of a 17 yr old autistic lassie and I’m not sure how I’m going to manage it all.  I’m type 2 diabetic too which complicates things a little bit — sugars are bad for me, yet I have to keep my weight stable through the treatment and will have to go on a liquid/smushy diet so I’m not sure how this will all work.  

Anyway, pleased to meet you and look forward to us both being better in the spring. 

Ruth 

Hi Ruth, good to meet you.

i've noticed a few people doing 'blogs' i'm not into doing things like that but i have looked out an old note book and am keeping a diary.

I am already on a liquid diet because i find it too painful to chew, even if i could it isn't easy to  swallow, I use my slow cooker to make all sorts of stews and soups, then i liquidise it. That way i'm still getting all my five a day etc.

I am still waiting on my last result so my 'plan of action' is still on hold at the moment.

This maybe the wrong attitude, but when i read through peoples experiences on here and a Facebook page i'm on  i thought oh..... and it did scare me. But then after it was a case of.. well i have cancer, it's happened and there's nothing i can do about it so just face each thing in turn when it pops it's ugly head.

I am finding it hard to find other things to eat, so being type two must be worse. i'm sure you could be referred to a dietician who may be able to help. They have with me because i have lost a lot of weight. Most of what they have suggested i can't physically eat, but there are some things i can that i didn't think about.. my brain goes into melt down and doesn't work in supermarkets !!

I would have thought your cancer nurse 'team' would be able to advice on some one/organisation, who can help with your 17yr old. I know it won't be easy for her having a 'stranger about' { my friend's son is autistic' so i do understand,a bit}

Good luck with your treatment and your lass.

Hi Ruth. I’ve commented on your first blog entry.

Your diabetes will have implications on your treatment and I’m sure your dieticians will be on top of it to get you through  

Stick around. There’s lots of help here. 

HunRuth welcome from me as well. I’m just iver 4 years post radiotherapy and chemo the waiting’s the worst part. As Dani says  keep your dietician s in the loop. Ask any questions someone will always try to help. Good luck with treatment and your young girl we have a step granddaughter (7) who is at the top of the autistic spectrum sending hugs. 

Hazel xx