My beatiful daughter of 30 years old has in the last month undergone two surgeries to remove a tumour from her tongue (about 1/3). The whole family are frightened to death about the future. I am heartened by some of the stories and would welcome some contact with other sufferers. Please can you help?

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello David

Sorry to hear about your daughter. I have 'amalgamated' your two posts. Members will be around to help where they can, pretty soon usually. Just ask the questions.

Best wishes
Vinod

Hi David,

I my self was diagnosed with Squamous Cell Carcinoma in November 08 I was 30 years old as well! I have had the surgery to my tongue I would say it was a chunk taken out, had the neck disection which showed 1 lymphnode positive and have undergone radiation. I am proud to say I made it thru though very tough and a pain in the rear. I lost a grand total now of almost 50 lbs not to say it wasn't needed but it is now gone. I have been back to work since mid April and was given the all clear beginning of May. I can tell your daughter it is not easy birth is easier and ends quicker and is also rewarding! But if I can make it thru this anyone can. Honestly at times I wanted to give up but all I did was look at my two cute boys and said no they need me! So I ate what I could and did what I could to make it thru and I did! Us women are very strong all we have to do is fight for what we want and we get it! Any questions you or your daughter may have feel free to ask I am always willing to share.

Hello David
Mom of two boys has said it all from first hand experience but I wanted to welcome you and to say you will find great comfort from this forum.
My eldest son was diagnosed with cancer when he was 17 so I understand fully how you are feeling. It just doesn't seem right to see your child suffering when you are OK yourself. I'm happy to say that even though he had a terrible time, and does have after effects, he is still here, healthy and will celebrate his 36th birthday in 10 days.
You will get through it.
My thoughts are with you and your family.
Best wishes from Down Under
Deborah

Hi David
My mother had SCC in her tongue and was operated on 2yrs 3 months ago. She was 77 at the time and is still here.
I won't pretend it's been a picnic, because it hasn't, but if I can help - please ask.

Hi David, Firstly I would like to say it is ok for you to feel scared and worried about your Daughers future.
There are many people on here who have gone through the same surgery and I have met many who go on to lead quite normal lives.
Its early days for your daughter and you have to just take on a day at a time and just be there for your Daughter.
Its tough but you can all come through this as is testement on here.
I am sure you will get more replies from your mail.
I hope you do keep posting and remember to look after yourself too.

Paul

Thanks to all that have replied. Brought my daughter home this morning from her second surgery. Although she had acceptable margins for most of the first operation she needed a further op on the tip of her tongue on the left side. Whilst in surgery the surgeon removed more of the tongue from her first op. We get the results in about 10 days time. How did you guys get on and what were your experiences? The good news is that 28 lymph nodes were removed in a partial neck dissection in the first op and they were all clear. I am taking this as very positive news. Also MRI and CAT scans also proved clear. Any of your experiences would be most welcome. Love and best wishes . David.

all looking very positive david good luck!!

Hi David

I hope you're all settling in well.

I'm nearly four and a half years post-op with stage 2 SCC. My surgery was pretty much an all day affair because my doctor removed the afflicted side (left, just like your daughter) and replaced it with a piece of my arm all in one go. Are her docs planning to do a resection/flap? The 50 lymph nodes he removed were clear, so when we got the pathologist report, there was much rejoicing (no rt, no chemo). I'm very lucky--I've been cancer free since my surgery. If she's told to do neck/shoulder exercises, make sure she does them. I didn't do them as vigorously as I should have, and now I'm starting to experience stiffness and pain in the left side of my neck--especially if I'm tired or after driving a lot.

I didn't talk for a while after surgery (wasn't told not to, just didn't seem like a good idea), so long notepads (legal pads?) were an essential if I wanted to communicate with anyone. One last thing: a bicycle horn came in handy from time to time if I needed help urgently and my carer (aka mom) was out of eye range.

I'm hoping for the best for all of you, David.


Julia

Hi Julia ,thanks for the post and glad to here your good news. Dawn has had a neck dissection and 28 lymph nodes removed - all clear. The tumour removed was said to be early stage 1 however the pathology report diagnosed it as a grade four cancer.She has just returned from a second surgery to remove some more of her tongue and to establish acceptable margins. Pray to God the margins are clear and that she can progress as well as you.
Good luck and best wishes David

Hi David,

My mum has just had surgery 10 days ago to remove most of her tongue and lymph glands in her neck and sliver of her jaw due to cancer, she is aged 77 and in pretty poor health, but is doing so well at the moment.

It will be a long journey, the consultant said, especially the eating. She is starting to talk again slowly, which we are surprised about, and although the consultant said she would have difficulty swallowing, she has been doing it today, with her saliva.

I hope you have good results about your daughter, she is very young to go through this ordeal.
Shirley

Hi All, some woderful news to report. My daughter Dawn went for her post op review with her consultant this afternoon. Unbeknown to us he had received the histology reports yesterday. They were all clear with 2.5cm clear margins and he declared her cancer free with no need for further treatment (RT etc.). She is still going to be monitored on a monthly basis for 5 years, and can return to work in three weeks time.
We have opened and drank two bottles of Bollinger in celebration. Wish you could all have been with us to celebrate. Its been a difficult time for all of us and can only wish you all the best for the future.I think we have been very lucky, they got it early, cut it out and even though it was a biologically active grade 4 it has all gone.
Will post regularly to keep up with your progress. For those of you who sent personal e-mails many thanks and much love.There is always hope.

Regards, David.

Hello David
This is wonderful news! I'm so happy for you all that I'm howling.
What a relief.
All the very best. I hope this teaches everyone that every day, no matter what ~ we should be cracking the Bollinger. EVERY day is a blessing.
Love
Deborah

Hi David

Haven't been on the forum quite so much lately and have only just caught up with your post. Great news! I am so pleased for Dawn and for you. It is nearly two years since my operation now; I lost a third of my tongue and had a neck dissection but, like Dawn, I didn't need any further treatment. I went for my two-monthly check-up yesterday and all was well; after my next check-up in September I will only need to be seen every three months. I am feeling fine. My tongue still feels a bit strange if I think about it or if I am tired and I sometimes struggle to eat salad (no great loss there!)but in general everything is good. As you say there is always hope.

And as Deborah says - every day is a blessing. And there is always Bollinger!

Best wishes to you all
Love

Gwyn

Hi Julia, I refer to my previous post. Dawn's and your situation appear similar. No RT or Chemo. Declared cancer free and back to work in three weeks time. We as a family feel blessed and very lucky. Got it early. My plea to all those who think they have some abnormality in their mouth is to see a dentist or a doctor asap. Dont delay, time is of the essence the quicker it is diagnosed the better your chances.
Not suggesting for one minute that we are out of the woods but feel considerably more confident than I did yesterday.
My daughters underlying condition was lichen planus in the tongue,the tumour grew at the exact location of LP.I'm somewhat encouraged by the fact that the tumour had not spresd beyond the boundaries of the LP.
I'm sure that there will be testing times ahead as we go forward with the monitoring programme. Thanks a million for your concern.
Unlike you Dawn did not need a skin flap, But like you she has a 'school bell' to attract attention!!
Best wishes for the future, David.