Hi there Heddus. Everything is tightly crossed that your biopsy proves negative. However IF it doesn't, you've come to a great place to get support from others who are going through it alongside you. My primary site was left tonsil, so I didn't need tongue surgery and can't help or advise on that. However I did make a couple of friends during the course of my treatment who had, and they didn't have prolonged speech problems - but every case is different as I'm sure you are aware. There's a wonderful, plucky young lady called Nicola who started this thread. She went through all this when her little girl was only 2 and she did undergo tongue surgery with tissue replacement. I am very fortunate and proud to have gone through 'my journey' alongside her and a 'gang' of others in 2013/14 (pictured in my Avatar). We met in London in 2015 then Liverpool early this year - next time Edinburgh when we are focussed on celebrating the magical 5-year all-clear in early 2019! I do hope your fears are unconfirmed. However IF you end up 'joining this club' I'm sure you'll be very glad that you dropped into this wonderful forum. Please let us know how you get on? Wishing you all the very best, Irene J x
Hi Heddus, the waiting game is really dreadful, I remember that time so well - exactly this time of year as it happens, I got my diagnosis on 31st October 2013! Keep your chin up and let us know how you get on? Irene x
I’m not sure if I’m posting on the right place but this was the first post of yours and I spent the last couple hours reading your whole story and found you to be so brave, positive, and just all around amazing. Your story touches me in my heart. You have made so many friends from this forum I’ve read a lot of Simon, Annebell, Deb, Meerket, and others and you all became such a source of strength for one another.
This is my story. For over a month I’ve had a sore throat sore neck and it feels like something is stuck on the back of my tongue. I was referred to a ENT who scoped my throat through my nose in his office. That was a week ago. The Dr said it “ might be squad cell carcinoma “ and if it is it’s “ at an early stage”, He ordered a cat scan for me which I had yesterday and they gave me the Disc to take to my follow up appointment tomorrow with the Ent. Oh and he said I needed a biopsy on the base of my tongue where he saw a lesion so that’s scheduled for May 8th. I have to get an ok from my cardiologist which includes a treadmill and an echo of my heart because I have heart disease ( 4 stents) first before I can have the endoscopy with biopsy.
Anyway im pretty nervous and really hate the waiting. I’ve stopped googling all my symptoms because it just made me worry more. It seems the only relief I get is prayer and reading all the success stories from following your posts. You see both my brother and my mom had head and neck cancer and they both were diagnosed after it was too late. So I’m really afraid it may be in my genes if that’s even possible.
So I see my ENT tomorrow for the results of my neck cat scan. I am hoping it’s all clear. Also my Dr said if it’s cancer it’s annearly stage. I was shocked with even the thought it could be cancer so I didn’t ask many questions but I can’t understand how he’d know it was early without the cat scan being done first? I did ask how big the lesion was on the base of my tongue and he held his fingers up and it looked like maybe a quarter inch to me. Tomorrow I’ll ask him in cm .
any advice you could give me on questions to ask tomorrow would be greatly appreciated. I really admire your attitude through your whole journey. I’m not strong like you but hoping you’ll wear off on me lol. Your whole group of friends on here seem to be so supportive and amazing.
Sorry for the rambling.
just reading your story on Nics thread and wondered how you are as it appears you haven’t had any reply’s to your post.
I’ve had major tongue surgery and the treatments etc but doing well now so if your having problems still (hopfully all is well ) please get back to me as I will now get a notification if you reply to this post
my best wishes to you
I hope everything goes well for you, I have been told it is really important to remain positive and as stress free as possible. This may be easier said than done.
I have a 1.5cm tumor on the back of my tongue, I only found out yesterday. I have an appointment with a consultant next week. I am guessing the next step is a biopsy?
I was until yesterday a perfectly healthy 50 year old man.
I have not told anybody yet. I think i will wait and see what happens and maybe I will share with family member, I don't want too many people knowing.
Hope things go well Nicola
I am just trying to get things off my chest
I'm not sure if this group is still active but...
I am sadly a new recruit to this group. On Friday I was diagnosed with a Stage 2 cancer on my tongue, the CT and MRI came back showing no signs of spread. My consultant wants to do an operation to remove the cancer from my tongue (2.1cm) under the right side, and also do a neck dissection to remove the lymph nodes.
Pretty worried about it all and reading this forum has been such a comfort to know I'm not the only one.
Just so confused at the moment I'm 29, never smoked and don't drink.
I'm mostly worried about how my family are going to cope as we go through this journey, I am trying to stay really positive about it especially around them as I don't really feel that telling them about me being scared might make them feel worse :s.
Sorry to hear this news and you must be very worried about what is to come. I remember it well and like you, was told more or less the same thing at first about a neck dissection and a partial glossectomy.
It is all so scary at first and it is a difficult time but please be assured that you will get through it. For me, the surgery was the easier part (although not pleasant!) but now you would never know that I’ve had done. Life is good and I live a very normal life. I have just been on a cruise to celebrate my five year cancer free milestone!
Your family will probably be the ones that get you through it, my little girl kept me positive and a reason to keep going which was the only thing I needed. We are very lucky have our NHS, they will work wonders for you and before you know it, this will all be over.
Stay at in touch, let us know how you are doing. Let us know when your surgery is and perhaps I can give you some tips or advice.
Dear Joe and all other 'newbies' embarking on this journey......
While it's hard to read about others going through the anxiety, emotional turmoil and gruelling treatment following a cancer diagnosis, I'm so pleased to see that Nicola's thread is still going strong and she continues to share her experiences with others.
I also underwent treatment for head & neck cancer in 2013/14 and Nicola's thread was truly the very best support for me as I went through similar ups and downs.
Through this wonderful forum I have been blessed to make and meet some very special friends - Nicola, Simon (AKA Fray), Guzzle (Gary J) and another Vatch (AKA Gamma-ray Gary) - I commend his wonderful blog https://gammaraygary.wordpress.com.
We all met up in London in 2015 and got to meet Guzzle's lovely friend Jayne who had been through a dreadful skin cancer experience and has been part of 'our gang' ever since. Two years later we got together again in Liverpool when my husband Malcolm and Vatch's lovely wife Claire joined us. Some of us have just had another reunion in Edinburgh this weekend to celebrate our 5 year mark. Sadly our 'founder members' Nicola and Simon/Fray/Dave couldn't join us but we hope to meet again in Bristol later this year or early in 2020.
I will never forget how much support, encouragement, friendship and laughs (as well as tears) this forum and these lovely people brought to me - just invaluable!
In the hope it might help others approaching treatment, going through it, or in recovery - here we are yesterday, very much enjoying life. My avatar photo shows the whole gang in Liverpool 2 years ago. Sending positive vibes to you all x
Sorry to read of your news.
I went through surgery for the same last month. I too was pretty much floored and wasnt sure if I could do it. But the folks on here gave me the push I needed to go for it.
You will be surprised at how you will recover,Im 6 weeks post op and fine,eating well, all healed up just a few twinges in neck scar to remind me. The numb areas will take a while to come back, but I hope not too long.
Your scan results are great news though, thats just what you want to hear.A wee bit positive news!
If you stay strong your family will too. My advice dont overthink things just take things a step at a time,dont overload yourself with worry and stressing.
Take care & best wishes xx
I went through the whole experience in January 2014 too. Unfortunately I didn’t find this site until 2015 so I really missed out on your wonderful support. I spent the whole of 2014 having operations, chemo and radiotherapy. I’ve just had my 5 year check with ct scan and I’m doing fine. Slight problem with my coroted artery this year which is something to do with the neck resection and treatment. But it’s fine really, I don’t let these things get me down, I just have to take some aspirin now to keep my blood thin.
Would be nice to meet up if you ever get nearer to Kent anybody
Oh dear I remember this happening to me regularly when I was a regular contributor to the site. I typed up a lengthy reply and somehow managed to lose it before posting! So here goes again:
Delighted to hear you are at the same stage us 'our gang' and doing well. We'd be delighted for you to join us when we next meet up, probably in Bristol. I realise it's quite a trek from Kent, but closer than Liverpool or Edinburgh! We'd welcome anyone else on this thread - Heddus? Joe? Clara? Pat? Sherry? anybody else I've missed?
Between us (Nicola, Gary aka Guzzle, Gary aka Vatch and Simon S) I hope we can remember to post on this thread when we have a date for our next reunion.
For those playing that dreadful waiting game for test results, I'm sending positive vibes through the ether. If you get bad news, get straight back on here for some great support.
Love Irene x
That would be lovely to meet everybody.
We can take our caravan for a few days in the Bristol area and also meet our other friends that live near. I’ll keep an eye out for your meeting date.
Love Carol x
We’d love to welcome some new members to our gang! There are plenty of places nearby in Bristol for your caravan Carol, we’ve had a good laugh when we’ve all met up and it’s a special friendship to have, as we’ve all been through very similar treatments. It really helps me to speak with and share experiences with people who really understand.
We will certainly let you know when it’s arranged.
Joe - any news yet? Please come back and let us know how you are.