Hi everybody I'm so glad I found this site, I wished I had found it a year ago.
Well my name is Suzi and I emigrated from the U.K. 4 years ago to live here in Ontario, Canada.Life has been great up until a year ago where I found a canker on the side of my tongue, it was quite sore as a few weeks earlier my back tooth had chipped and was rubbing on it. I swilled with salt water but nothing and by abou week 8 decided to go and the the Dr.who referred me to a specialist. This was end of November 2006. When I saw him he took a biopsy and said he doesn't think it was cancer but was being on the safe side. Along with this I went to see the Dentist to sort out this chipped tooth. My results came back and everything was ok. But the canker wasn't getting any better.
It was now January and it started getting slightly bigger so I went to see the Dr. again and he referred me back to the specailist but that took until early May to see him. In the mean time the canker was healing up but not fully and then getting sore.
When I saw the specialist he thought I'd better get another biopsy but he couldn't do it in his office so booked an appointment to see him at the hospital. Me and My husband Steve went to see him and he took one look and said you don't need a biopsy but come back and see me in September for check up. About a week and a half before seeing him my tongue started to swell and it split down one side. Went to see the guy and he sttok 2 biopsy's and they came back positive after 1 year of having check ups.
It turns out I have Squamous cell carcinoma, which is quite advanced and I have to have 75% on tongue removed and lymph nodes on right side plus 6x5 days of radiation and chemotherapy.
It has been a great shock to us as being told it is cancer then it isn't. It hasn't been a good year for us. I'm 48 which the Dr.s say is in my favour and also I'm with a surgeon who is the best in Northern America. They are going to reconstruct my tongue along with everything else and the op is going to take 10 hours.
We have 2 young girls aged 9years and 5 years as it's my 2nd marriage so I have to live for their sakes and of course my darling husband who has been brilliant. He is taking 3 months off work to take care of me and the girls so I'm realy happy about that. I have a lot of friends here that are helping out. My family are back in the U.K.and haven't told my parents yet as my brother had a stroke last year and he can't walk or talk so I'm just feeding then a little bit of information at a time.
Anyway that's me done for tonight.
Oh bye the way my surgery is next Thursday and after reading up a little bit on this forum was wondering if I could avoid surgery and have radiation instead?
Thanks for listening bye for now

Hello Suzi

So sorry to hear about your tongue cancer. It is always an upsetting diagnosis. From what I heard last week at an Oral Cancer meeting, and as you have found out, biopsies are not fool-proof. Biopsies have to be repeated if an ulcer doesn't heal. Until it heals (and after), there is no substitute for vigilance.

The consensus presently is to do surgery to remove the tumour whenever possible provided it can be excised whole and the resulting defect can be reconstructed and quality of life acceptable. Radiotherapy is reserved for when it appears there is a chance that lymph nodes might have missed despite a neck dissection to check for and or remove any spread. Chemotherapy is often added to both shrink the tumour to manageable size and help kill anthing missed. Some new drugs like Erbitux and Taxotere help make the chemotherapy or radiotherapy more successful. Speak to your oncologist to explain your options and which is best why.

Keep a positive attitude and do your best but always remember "all life is terminal, so enjoy each day for the little joys it brings." The journey isn't easy but you will make it and we are all here to help. Take care and good luck for next Thursday.

Best wishes
Vinod

Hi Suzi
Welcome. You have definitely come to the right place .The guys on here are the most helpful, encouraging , supportive and inspirational people you will find anywhere. Please keep us all informed of your progress and I'm sure that my best wishes will be followed by many others. Good luck for next week. I'll be thinking of you
Love and regards James.

Hi Suzi. Welcome to the site. I had SCC in my sinus a few years ago. You've definately found the right site so stay positive if you can. Regards,Hagg.

hi suzi
sorry to hear of your diagnosis the surgery can seem quite daunting but as you will see on this forum we will try to support you as best we can i had major surgery 9 weeks ago cancer removed from tongue and neck dissection it seems a slow process for recovery but the body is amazing with its healing i wont say it is an easy operation but with the love and support from your family you will get through this by the way what part of wales are you from i live in the north good luck for thursday bevxx

Hello Suzie, sorry you have had to join this most exclusive club. My husband is the patient; he was diagnosed with SCC of the tongue with secondary in the throat and lymph glands last March. His was a stage 4. We were told that surgery would be too radical and that he would have no quality of life if surgery were performed, they would have had to remove the whole of his tongue, without there being enough healthy tissue left to build a new one and he would also have to have his voice box removed. He has never been in hospital in his life and the only illness beside the usual colds etc., since I have known him was tonsillitis, which was over 40 years ago. He has however, remained staunchly focused and totally positive. He would not read these boards because as far as he was concerned that’s what happened to other people - not him.

He was treated with 3 x 5 day courses of chemotherapy (initially there was only going to be one but after the first day you could visibly see the lymph nodes on his neck shrinking so I guess they thought they could try some more) After a two-week rest; he had 20 sessions of radiotherapy. He was quite poorly half way through his radiotherapy which was about ten week ago now. He still has the NG (up the nose tube) and continues to take all his medications through it but we are slowly, very slowly introducing food taken by mouth although I am disappointed that he is not feeding better, he eats only soup which I make fresh and liquidise, at present but we will persevere.

We went to see the consultant about 6 weeks ago and he was very pleased with Bill’s progress. When I asked him when would we know if the treatment had been successful, he very casually answered ‘ well, it all seems to have gone’.

By the way, Bill is a very young 67, he had no other problems, high blood pressure etc., but not what you would call Olympic standard fit.

So my dear Suzie, you have a long journey ahead of you. Be focused, be positive. If Bill can do it, so can you.

Keep us posted.


Angie

Angie,

I just wanted to say well done to both you and Bill. What a great story and what an achievement. I like Bill's attitude. Don't worry the eating will come.

Lorraine

Hi Suzi,

Welcome. To be truthful I was a bit horrified on reading your story, how many referrals and checks do you need? At least they've got their act together now and you will have your husband to support and take care of you. This will be vital to your recovery and I'm sure he will do a great job. As a carer myself please make sure you let him know we are here for him too.

Good luck for Thursday.

Lorraine

Hi Suzie,

As I am not a part of the medical fraternity I should not be commenting on the surgery part and the radiation bit. I would suggest you talk it over with your oncologist and then decide. Most oncoligists- especially the surgeons are most happy to operate and get rid of the cancer once and for all and this can be very traumatic for the person undergoing the treatment. I will also depend on your staging and age.

I refused surgery as they kept insisting that it was the only recourse - so at loggerheads - I got my way and my cancer was in its last stages. I went in for radiation and chemo with a clear idea of the future as surgery was something I could always revert to if this failed and luckily I still have my voice bax intact though my vocal cords are not much of any help as they are stuck and not moving. You could read my story on the main page of this site at the survivors stories under Ananth's Story.

As far as friends are concerned - you could not have come into a better site where each one really cares for the other. One happiness is everyones happiness and anyones pain is also everyones. Feel free to post anything you want and you can rest assure you will return some great replies - which will not confuse you but help you in making up your mind.

Take care Suzie,
Love,
Ananth

Hi Suzi,

It is close to your op date, and I shall be praying for you on Thursday. My wife is waiting for results and is understandably nervous so I can appreciate what you must be feeling. My wife is older at 59 and not well in other respects so if the results are bad surgery may not be an option, we shall have to wait and see. Only you can decide whether to take the advice or not, you have age and otherwise good health on your side and young children and not least your husband to balance into the equation.

Listen to all the professional advice, discuss the care issues with your husband, who already has shown his commitment to you, and keep a positive outlook, so easy to say I know but it is so very important for the recovery process should you elect to accept the surgery. You have everything to live for and there are some remarkable stories on these boards with respect to how ordinary folks are coping with this most awful disease.

If you are a person of Faith then you will know that God will guide you in many ways, look for His signs - again not least through your husband and do not be frightened to lean on your husband for he is there showing he cares and supporting the whole family: you have many blessings in the face of your adversity.

God bless you and all whom you love may you see his infinite love and grace all around you in your family and medical team and the wonder of his Creation. We now enter Autumn and Winter follows each with their respective beauty but knowing that Spring will come again with the promise of rebirth and renewal. Alan

Hi all, Thankyou so much for your kind words and great support it made me feel so much better. It made me shed a tear or two.i am thinking positive like you said i've got everything to live for and I;m a very strong person also.
Lorraine you are right I was concerned as how long does it take to find out if I;ve cancer or not. It took him a year, and his bedside manner was very rude. He told my husband to sit on a stool in the corner and not to come and sit with me when I was having a biopsy, but my husband didn't listen and came and sat next to me to hold my hand (bless him). One time when I was there to have another check-up I took my 9 year old daughter with me and I introduced her, and when he took a look at my tongue he said "that looks like cancer to me" right in front of her. I told him quietly please don't speak like that in front of my daughter and he said matter of fact "sorry".
Anyway saying all this won't take my cancer away so I'm thinking about the good things we can do when I get better and I know I am as My age is for me and apart from this I've never been ill.
Oh well 2 more sleeps I tell my girls and Mummy will be better. I've told them that I've an infection on my tongue and need an operation to put it right. Unless they ask otherwise I'll stick to this. I've been waiting for information to come from the hospital on how to explain this illness to your children but they haven't arrived yet so I don't want to put my big foot in it and confuse them.
Anyway got to go and sort a few things out and write some more lists for my darling husband as although he looks after the girls well he is away from home 2 weeks at a time in the truck so he has to establish a routine or he will be pulling his hair out. I think he will have to get up at 5.00am for them to be in school by 8.50am.
I read your story ANANTH and I was very touched by it too, you have been through it big time and still you have bounced back. I'm thinking of you and do take care.
Bev I'm from South Wales near Swansea.
Well got to go and all of you take care and I will be thinking of you all, and I'm so glad I found this site with really good people like you. Take care all Love Suzi

Hi Suzi. Sounds like you've had a bit of bad luck with the Drs involved in your case. I had one hyperbaric dr who told me my face would rot and fall off if I carried on smoking. I nearly knocked him out. It was very early in my diagnosis and I was a bit fragile. Gave up in the end but that was my choice and sod all to do with him. Keep your chin up. Regards,Hagg.

Hi Suzi,
I'm thinking of you and I know you have a long journey ahead. I'm so glad you have found this site as well it will help you in so many ways. It is such a shame you had a run around in the early days but I hope they stay on top of it now for you. My husband was the patient but I learnt so much as a carer on this journey. I will keep you and your family in my prayers.
Tracey

Hi Everybody, I'm back! I cam out of hospital on Thursday after nagging the Drs. silly from day 4. Got a setback with diorrea sp and vomiting as I couldn't get used to being fed through a tube in the nose. So they inserted a G2 tube as I need one when I go for radiation shortly. I got a little depressed in hospital as I really wanted to be home with my little ones, but persevered. Now I am home I feel great and learning how to swallow soft food which I done in hospital in the last few days. I am sleeping better and my appetite has hit the roof thank god as I lost over 40 pounds before I went in hospital. I looked skin and bone and It just wasn't me when I looked in the mirror. Now after just over a week my tummy is slightly filling out. I know it's going to take a while but I am so thankful I've got my appetite back before I have radiation.
Anyway guys I know it's still a long haul but I am looking on the positive side as I have loads to live for with my girls and darling husband who has been absulutely brilliant through this.
Anyway all you guys take care and am thinking of every one of you and pray for you all each day. Will let you know how I get on later.
Lot's of love to you all
Suzi xxx

Welcome home Suzi,

I'm over the moon for you.

There is only one way to go now, may God pour his blessing on you, your girls and Hubby and all others whom you love.

Keep positive and smiling you know that you are not alone, well done, Suzi - well done!

Alan