Hi, This site is great. I was diagnosed on Tuesday with tongue cancer. I am 37 female and a non smoker and i thought i must be the only one going through this. Your stories are inspirational and I'm really benefiting from reading about your experiences.

I can't believe that everything is happening so quickly! After months of worry, suddenly, in 1 week my worst fears have been confirmed, I go through a whole raft of scans, wait to receive my full treatment plan, and learn that I will have surgery in just 2 weeks time. Phew!

Your stories give me hope.
SW

hi sw12

so sorry you have had to use this site,but now you are here i'm glad you have found it comforting i know i do. we all know what you are going through and about to go through and will be thinking of you. i'm 9 months post operation for a tumour on my tongue and life can and does go on.... Keep positive and keep in touch.

gordon

Hi SW12

Welcome to the club no one wants to be qualified to join. I'm beginning to think that not fitting the tongue cancer profile is the new profile. I didn't smoke, drink heavily, or anything that would have contributed to the situation, but, as our former president, Mr. Reagan said, "there you go again."

The time from my first doctor visit about the thing on my tongue to surgery was 42 days; those six weeks passed in the very slow blink of an eye. Here I am, nearly 4 years later, and I'm quite pleased with the outcome. All I had was surgery (hemiglossectomy, free flap resection) and everything is going well. Have your docs told you what your stage is and what they plan to do?



Julia

Thanks for your message Gordon.

Hi Julia, My doc doesn't seem to think that the cancer has spread to the lymph glands, but i have an MRI, CT and ultrasound booked for tomorrow. I'm booked in for surgery to remove the growth and surrounding tongue in a couple of weeks and i will have flap (great term !). That's all i know at the moment although they have advised that i may have radiotherapy as a belt and bracers measure.

I feel positive about it all, and even more so since reading your stories.

S

I am glad you found this site!! The great people here gave me advice to help my father that was truly priceless. Specific products to help him that his doctor never mentioned and only after we showed it to them did they say "oh, yea, that might help" MIGHT HELP?!?!? These were the very items taht made his life better every day!! Once you find out your exact treatments are write back and I know many will chime in to give you the same direction they gave me!!!

Hi SW, sorry you had to join us but glad that you find the forum a comfort. Hagg.

hi sw
welcome to the club that no-one wants to belong to.you will need lots of support and you will get that here.i too had tongue cancer,no surgery but chemo and rt.i remember when i was first diagnosed and all the scans,like bone scan,ct scan and mri scan plus investigative surgery there was not a day when i did not have to go to one hospital or another.good luck for your surgery and please keep us informed of your progress.love shirl xxx

Thanks all for your messages. I've moved into the treatments and therapies thread now - I'm really keen to learn from your experiences and gather strength from this. thanks again.
S

Hi SW12, sorry to learn your news. I am a recent tongue cancer patient, I had all my treatments at Bodlewydan, St Asaph. The NHS in this country is something to be proud of, ANYONE WHO SLAMS IT SHOULD BE HUNG DRAWN AND QUARTERED AND SHOT BEFORE DAWN. The care is phenominal. Its a bit of a challenging journey this one, but its doable, and I actually feel quite good after it all.

If I can offer any sort of guide-ance please ask as I have a lot of recent experience. In fact I am meeting up with someone I met in hospital, she was next under the knife so to speak. She sounds great on the phone so should be a good weekend. Of course she worries about her looks but I think she looks great, she does, lucky.

Where are you? I admire your courage.

Take care Nigel

Thanks Nigel. I agree with your sentiments on the NHS. I am being treated at the University hospital in Cardiff and the way the machine has kicked into action is very impressive. I feel I am in very good hands and this really helps to keep my spirits up.

I am feeling up for the challenge - not one I would ever have envisaged going through and initially the shock and fear was overwhelming, but I feel I have a better perspective on things now. I have a 7 year old daughter and so she is an amazing reminder of why I can't let this consume me.

I'm so glad that your recovery is on track and I hope my experience will be similar.

Good luck with your meeting!
S

Hi S,
Sorry to hear your news but this is an excellent place to come for advice & support! This is the first time that I have posted but I have been a regular visitor since I was diagnosed with tongue cancer on 27th December 2007 (yes, that date will always stick in my mind!). I had my operation on January 23rd 2008, so I had nearly a month of waiting and the waiting is the worst part!
I, like you am a female non smoker and drinker. I was 32 years old when I was diagnosed. I have 3 beautiful boys (Lloyd 13yrs old, Dafydd 8 yrs old & Iestyn 7 yrs old). It was a shock when I was diagnosed but I had sort of guessed that it was something more serious than an ulcer. Anyway, I had about 1/4 of the right side of my tongue cut away and replaced with a flap (skin & artery) from my arm. The skin on my arm was then replaced with skin from my stomach. I also had a radical neck disection on my right side of my neck. The operation was about 9 hrs long and my husband said that was the worst day of his life, waiting for the phone call to say that it had all gone well. I stayed in hospital for a week.
Luckily, when my results came back none of my lympnodes had been affected. However, I had to undergo radiotherapy as the margins weren't as good as they should be. My speech after the op was pretty good and it has got much better with time and now no one knows the difference. I had 6 weeks of radiotherapy afterwards and this finished on April 25th. It has been a long journey but here I am now back to normal apart from being 4 stone lighter (that's a plus!). Don't worry the weight loss was not due to the surgery, in fact I put on weight after the surgery as I was eating without problems. It was the radiotherapy that caused my weight loss. I am now a size 10, the smallest I have been for years and I feel better for it! My friends laugh when I say "it's the best diet I have ever been on!".
I have been having regular monthly checks ever since, soon to be every 2 months! Hooray!!! I am also having regular scans. I am due for one very soon.
I live in South Wales, so probably not too far away from you. I had my operation in Morriston Hospital and my radiotherapy in Singleton. If you have any questions that you want to ask then go ahead. The most important thing is to stay positive and it looks like you are! So well done!!!

Hi Lisa, thanks for your message. Our circumstances seem very similar - why haven't you posted before? I seem to be getting therapy from just talking about this as much as i can, but I know everyone is different.

I'm so glad your recovery is on track and I completely empathise with your comments on weight loss - i think i must be the only person to gain weight whilst living with tongue cancer ;-). I've been really lucky to have no ill health at all and no discomfort, so eating hasn't been a challenge!

I've had a good day today. I've been for the MRI, CT and ultrasound scans and have been told that they can't find any evidence of the cancer in the lymph glands. This has given me hope, but I still wait anxiously for the full story on Tuesday.

Your story really gives me hope.

S

hi, this should probably be in a seperate thread altogether (maybe i will start one) but i couldnt help but reply to Lisa's post.

I was intrigued to find that you have had monthly checks and regular scans since your radiotherapy...can you tell me what scans you have had and how often you get them?

I finished radiotherapy on 7th july, i had chemo too as i did have lymph nodes that were affected. Since then all i have had are "physical" checks monthly until last month when the consultant decided i should wait until january for my next one (making it two months). I was expecting to have some sort of scan as i cant see how a physical examination of my neck and tongue can be fool proof! But i haven't had any! I would be very interested to know what other people have been offered and what checks/scans people have had post chemo/radiotherapy.

gordon

Hi Gordon,
I had my first scan nearly 4 months after my radiotherapy finished. It was an ultrasound scan of my neck and face and it was very in depth - apparently they are quite accurate. They said then that I should have regular ultrasound scans every 3 months. I was due one this month but they had forgotten to arrange an appointment for me. I contacted them and they are dealing with it. So I am expecting an appointment any day now!
They did mention that I would probably have other scans but I am not sure when they will be scheduled for. I will let you know when I see my consultant next. My life seems to revolve around hospital appointments but I know that they are for my own benefit. I hate going for my checks but I do feel much better after them. I hope that you aren't feeling too bad after your treatment.

Thanks lisa

i'm going to ask them why i haven't had a scan! what you are describing is the sort of attention i was expecting..suppose every hospital trust is slightly diffrent.

I'm feeling pretty good now thanks, i also suffered the "diet" and lost 4 stone and i'm still on sloppy food but its ok i'm coping and looking forward to the best xmas ever with my kids. Plus i dont have to suffer all that turkey that everyone else has to endure. some sort of sloppy mash, soup and ensure will see me through keep smiling!

gordon