Mouth Cancer

Hi Bunnygirl,

Sorry to hear about your dad.  This is a great group to come on to and get support.  Don't forget you can also call Macmillan and chat to someone, not sure if that is at the weekend too but it is fab, have spoken to them a few times.

I have just finished treatment for cancer in my tongue, it is really scary when you don't know all the details or what his treatment will be, sounds like they are right on it though.  Do you mind me asking how old you and your dad are?  Not that it makes a difference but gives some background.  Has he been given pain relief from his GP?

Hello thank you for replying. I'm 53 and my dad is 93! But is otherwise in good health and active. No pain relief given just told to take paracetamol but ots not helping also salt water washes but they don't help either. I can ask in 2 weeks when we see the consultant but thought I might be able to buy something to help gegore then.Hoping your treatment went well. Wishing you a speedy recovery. 

Hi bunnygirl

So sorry to hear about your Dad. First....there is no need to wait till you speak to the consultant. Your father will have an allocated CNS Cancer Nurse Specialist. Get in touch and say you need some decent pain relief. It sounds like he needs cocodomol at the least and better still some oral morphine. I would also ring his GP and insist on something. He shouldn't need to suffer. Oral cancer is really painful and as you have pointed out paracetamol doesn't touch it.

Please do ring Macmillan.         0808 808 00 007 days a week, 8am - 8pm You can talk to somebody who will be sympathetic and can give you practical advice.

If you click on my other link below and scroll to the bottom of the page there are links to the chat line and to email if you would prefer.

OTHER INFORMATION

Best of luck and let us know how you get on

Hi Juliesss,

My mum has just been diagnosed with cancer on the tongue. It's early stages and she's to go for an mri to see how big the tumour is. She had the dietician call her to explain she might have difficulty with eating and swallowing. I was wondering what your experience has been now you have finished your treatment?

Hi Butterfly

I'm not Julie but I can fill in till she replies. I had tongue cancer T2 and had radiotherapy for it. Eating was difficult after 3 weeks and I relied on a nasogastric tube. By 6 weeks after treatment finished I could eat soft food and by 12 something more substantial. Radiotherapy to the mouth leaves the salivary glands compromised and you have to live with a dry mouth and all that comes with it forever. I am 2 years plus out of treatment and living well.

Hi I am almost 3 years post radiotherapy for tonsil cancer with several affected lymph nodes. Below there s a link to my blog snd others it may give you an idea of what your mom may face. Once you’ve got her results pop back on and  we will be able to help you. 
it will be hard for your mum she may be offered a feeding tube be advised by her team they will guide you through everything. Some manage without many don’t I had nasal tube fitted week 3 it was a lifesaver. I put all my meds water and high calorie food fro is through it. This stage us the worst it’s fear if the unknown . 
best  wishes to your mum 

Hazel 

Hi Butterfly, sorry to hear about your mum.  Such a worry when we have a parent who is poorly.  I will say that treatment and reaction to it is very individual, you will see that from Dani, Hazel and my replies.  I knew something was wrong when I found a lump in my neck.  Scans did no show a primary tumour but they knew where it would most likely be so removed my tonsils and the tissue from the base of my tongue which is of the same type.  Biopsy showed that the tumour was in this bit of tongue and all had been removed surgically with good margins.  It was quite small.  I then had radio and chemo to deal with the neck lumps which were not suitable for surgery.

I have fared well through this treatment compared to many others.  My radiotherapy was targeted to just one side of my neck with not much being put onto my tongue.  Because of this I have managed to eat and drink the whole way through with no need for a feeding tube.  My taste has been affected but not ridiculously so.  I also have a good amount of salivary glands intact so a little dry mouth but not too much.

Apart from noticing a slight change in swallowing technique for the first few days after surgery I have not noticed the missing bit of tongue at all.  This will obviously be different depending on which bit is taken but there is hope!!  I am nearly 6 weeks post treatment and can eat or drink exactly the same as before the surgery.  I really hope this helps.  It's horrible waiting around for scan results etc but gets better when you can crack on with treatment!  Great to get support from this group too whenever you need it xx

Julie

juliesss said:

I have fared well through this treatment compared to many others.  My radiotherapy was targeted to just one side of my neck with not much being put onto my tongue.  Because of this I have managed to eat and drink the whole way through with no need for a feeding tube.  My taste has been affected but not ridiculously so.  I also have a good amount of salivary glands intact so a little dry mouth but not too much.

This is what makes the difference. My cancer was in the base of my tongue in the lingual tonsils too but was too large to excise so my throat took the brunt of the radiotherapy. I have recovered well but had a harder time of it