Hi Bassplayer 

please get an appointment for your dentist straight away, don't want to scare you but at the start of lock down last year I had a lump on my tongue, which then turned in to what looked like a rip along the left side of my tongue it turned out to be cancer. I wouldn't want anyone to go through what I have, I had to have my tongue removed. Please let me know how you got on fingers crossed for you. 

Oh my goodness Sandi that sounds awful!!!! How are you now? How do you cope with the removal?

I'm not registered with a dentist yet as moved to Notts from Leics and it is so hard to get in anywhere now, since Covid!!!! Was thinking of trying the doctor first????? What do you think?

What was your lump like? Colour, size, type etc???

Oh I do hope you are okay now. You have obviously been through so much!! It does sound very scary.

Thank you for replying to me. I am pretty scared, I must admit as not always good prognosis ..... Trouble is, I don't know how long it has been there!!!??? It's not something we tend to look at is it. Only noticed it as I have a receding gum at the back which seems to have tiny shards of broken teeth in it??? Or something???? Was getting really worried about that, then happened to notice my tongue..... oh dear.

Thank you again for your response. 

Bassplayer

Hi Sandi

I haven't stopped thinking about you since you wrote!

How are you coping? How has it affected your life? Although a stupid question probably!!! Are they able to do something for your loss???

I keep thinking about the horrors you must have been through. Are going through... I was so sorry to hear of your outcome.

I haven't arranged anything yet because of bank holiday etc. and also lack of transport, no dentist....so it will have to be the doctor. I'm hoping he'll accept a photo as I'm not familiar with video calls...Sigh.

Things are so difficult at this time. I do hope you are recovering but cannot begin to imagine how you are coping. 

take care and stay safe

Bassplayer

Hi Bassplayer 

I got my operation August 18 last year. I had 12 hours in surgery and I was cut from ear to ear. They did not intend to take my full tongue only part of it, but while I was waiting for my surgery the tumour has changed and gotten bigger. I also got my Lymph glands removed, Imhad cancer behind my voice box which they can't operat on. I also had all my bottom teeth taken out. They made me a new tongue from muscles from my stomach, which they call a flap. They had to put a trachie in to help me breath but only for a couple of weeks till everything settled down. After a visit to the dentist before my radiotherapy and chemo I found out that if I took radiotherapy that there not be any chance of reconstruction on as they have to drill into my lower jaw to put teeth back in and the bone would not be strong enough.

this horrified me and I had a meeting with my oncologist and surgeon and told them I was refusing radiotherapy due to this. But I have a fantastic oncologist and I got Chemotherapy and a new drug that has just been passed for head and neck cancer. The good news is the cancer is away and I'm in remission but I'm on the now drug every 3 weeks for 2 years to keep the cancer at bay.

it's been a long hard road, I taught myself to speak again but have a very bad speech impediment that the speech therapist can't really do anything apart from exercises because my new tongue is stitched to the bottom of my mouth. I also taught my self to eat again as they said I would be peg fed for the rest of my life. Soft food and cut up really small because I can't chew I have to swallow things whole . I haven't used my peg since February. It's been really hard to adapt but I have fantastic friends that have helped me through. The chemo was rough but got there.

Now I'm on a mission to get my reconstruction they stitched my new tongue to the back of my lip and over my gums, so I have another meeting with my surgeon and a specialist dentist to discuss the operation. The dentist said they would need to push my tongue back a bit to leave space for teeth. This disfigurement is the worst to handle, I 'm lucky everyone is wearing mask just now. I have a tissue in my mouth as my saliva is out of control due to no tongue, but they have given me patches to wear to stop it.

I don't drink or smoke so was just bad luck, but I feel my doctor left me too long. If he had of put me to the specialist earlier I would of only lost a bit of my tongue, it wasn't till I took myself to A&E did he then decided to put me to the specialist with in 3 weeks I was in surgery. I wish I had of gone to A&E earlier.

My life will never be the same but I try to keep upbeat, but some days are really hard. But I'm alive and in remission. I haven't come across anyone else that has had this operation as they are usually caught in time. I just had bad luck and lock down. 
Fingers crossed for you that it's nothing nasty but keep on at your doctor or even phone a dentist and tell them of your symptoms. The sooner your seen the better. xxxxx

Oh Sandie you have been through so much!!!! It is a horror story! Dare I ask how old you are?

You have been left with so much to cope with. And you mention your friends being such a help to you. That was wonderful. What good friends you have! I would be afraid that, if something were to be wrong, I would be reluctant to go out again. I also play in a band (hence the silly name lol) and sing harmonies and obviously, should I be unlucky too, I would never be able to sing again. So much to factor in isn't there. 

I assume that as you have no bottom teeth, that alters the frame of your face?!? My heart really goes out to you! Cancer is bad enough for anyone, anywhere, but the face and head......everyone's  worst nightmare I should think!!!

You must be in a really dark place right now but you keep trying to remain upbeat. Do you think there will be a chance of having teeth back again, if they can operate and move the flap further back??? I wonder why they put it so far forward and over the bottom gums??? Surely there must have been an alternative?

Brave lady Sandie. Bless you x

Bassplayer 

Hey Bassplayer

I'm 52, yes no bottom teeth that does alter the shape of my face. I have no idea why they stitched it to the back of my lip and over my gums. I'm not giving up, there is always a solution to all problems I just haven't found it yet. I have been to hell and back but I got through it, looking back now I honestly don't know how I did. I never go out without my mask but at some point I'm going to have to brave it. 
Please get yourself looked at ASAP, my friends are amazing, won't be long till I pull myself up again. Life's too short and I've learned that the hard way. xxx

Hello,

Googling is not good for medical advise as we always think the worst. Why have you not phoned a medical practice?, this is the best way forward to get help!. Regardless of your other difficulties.

Sandies reply (which appears quite tragic) is not what you want to hear, as there are many reasons for tongue problems, so make that phone call and talk to the medical practice for an appointment, which may be in person or over the phone.

Best Wishes!.

Thank you Colin. Yes you are right, Googling always gives the same impression - Cancer! I don't know why we do it and lots of us do; I believe it's to get some reassurance that it's NOT cancer, the one thing it always leads us to!!!

Transport is still a problem but a phone call will be made. If I need a face to face appointment, which I feel I may, I'll have to think of how to get there. It's difficult to get an appointment at the moment so whatever they decide, I must try hard....

Thank you again for your input. I will try and focus on the fact that it may not be C and not that it probably is....

Bassplayer 

Do you mind me asking Colin.....did you have tongue cancer or thought you may have had? Or do you work in the health industry??

Wise words from yourself.......

Bassplayer

Hello again,

I experienced the effects of cancer during my wife’s 8 month treatment for pancreatic cancer which was shortly before the Covid crisis. She was able to quite easily see a hospital oncologist after referral from a Doctor and to attend regular Chemotherapy treatment and had quick access to help lines for any advice or problems she incurred. It was quite a quick but long learning curb to take it all in!.

Have you been able to make contact with your G.P. surgery about the concerns you have and stressing the importance of getting an appointment. I understand that you have transport difficulties but surely your G.P. must be within walking distance.

It is down to you to persevere to get an appointment even if it means going to the doctors surgery to ask for an appointment. .

Best Wishes!.