Dear Cyber family,

My mum has been diagnosed with Tongue Cancer. The stage of the disease is not known yet. She is due to get results on Wednesday 18th December 2002.

I am so worried because mum has been experiencing a lot of pain in her right ear and down the same side of her throat. She also has pain in her right temple. She is taking pain killers to relieve these symptoms however I am begining to panic.

Could it be that the cancer has spread and that it is spreading at an alarming unstoppable rate? Can it spread that fast?

What am I going to do? I feel so useless. I keep imagining the worst. In my mind I can hear the consultant giving us more bad news on the 18th, but I can't hear any good news.

Am I worrying too much? Unfortunately for me in the past my intuition has usually been right and I am going out of my mind with worry.

A very worried

Kathleen.

first of all, take a deep breath and calm down.

i'm a survivor who had over half of my tongue removed. before my surgery, i was in alot of pain and required pain meds to get through the day. it's a common thing.

oral cancer is slow to spread. i had to endure a whole month between my diagnosis and the first day of treatment. don't panic yourself that the cancer is running rampant through your mum. it's not going to do that, so have faith.

i will think of you and your mum and add your family to my prayers.

please remember that times look tough now, but you both will get through this. things will come out fine in the end, it is just a rough road to go down. keep your head held high and keep hope in your hearts.

Kathleen, Jeanette has said it perfectly. Print her response, paste it on your mirror or refrigerator, and read it every time you begin to panic. We all know what a scary time this is for you and your mum. Please know that many people are wishing you well. Hang tough and hang in there. The reality is rarely as terrible as what you can conjure up in your imagination.
Joanna

Kathleen,

The kind of pain you describe is very similar to what my daughter experienced. Her pain began deep in her ear and progressed to her throat before she was correctly diagnosed. From what I've read, pain in the ear and throat seem to be a common symptom of tongue cancer. It does not mean that the cancer has spread beyond the oral cavity.

The surgeon said that the pain is caused by the tumor pressing on the nerves that lead to the ear. Heather's tumor lay along her jawline and was only 3 cm. long, but it caused her a lot of pain.

Rosemary

Rosie,

My friend is having pain in his ear and jawline. Doctor and dentist have been no help. I have told them to get to an ENT?? Is that who found your daughter's cancer? Can you tell me how? I'd like to explain more to them intelligently and try not to scare them.
Any information would be helpful?
Thanks so much,
Dinah

Thanks to ALL of you who responded to my post. Jeanette your reply eased my worries a little, enough to allow me to get in a good night sleep. I still feel a bit anxious, but I am trying to get through one day at a time.

I went to the library a couple of days ago and borrowed a really good book. It says something about how important it is for the care giver to also to remember to take care of themselves. It says to allow yourself a bit of time away from the situation to do your own thing in order to give back to the person you are caring for. Does that make sense? I hope I have put it clearly.

The other thing which interested me in the book was something about visualisation. It says that the patient could try this technique where they take time out to relax their mind and visualise a picture of them being completely cured of the disease.

So today, I decided to take time out to wrap up all my family's Christmas Presents. This put me in a cheerful festive mood. I am now trying hard to visualise myself enjoying a happy Christmas Day with my Mum, Dad, my husband and two boys aged 5 and 4 years. I am hoping that mum will not be in hospital on Christmas Day.

Mum is still experiencing this pain but the appointment to recieve results of the MRI Scan is on 18th December so we will know more then. I am praying for good news. Will keep the board posted.

Thank you all once again for your replies at a time when I was completely losing it. I am so glad I found you all.

God Bless everyone.

Take Care

Love

Kathleen.

Kathleen,

So glad to hear you are relaxing a bit. Good luck on the 18th. We are all pulling for you and your Mum.

Dinah,

The ENT did find my daughter's cancer, but not right away. She had no outwardly visible signs. Her first symptom was the pain deep in her ear. Then she had a sore throat. It hurt especially when she swallowed. Then she had the pain in her neck and jaw. She could feel a lump inside, but no one could feel anything on the outside.

The CT scan didn't even pick up on anything. Although I do wonder if she maybe just had a poorly done scan because it didn't even show anything wrong with her lymph nodes, even though one was 1.2 cm when removed during surgery, which was performed only a few weeks after the scan.

Anyway, by the time the scan results were back, Heather could actually see something protruding from her tonsilar cavity. When she pointed this out to the ENT, he then poked and prodded until he could feel a bit of the lump. He did a biopsy the following week, which of course was positive for base of tongue cancer.

The main thing is for your friend to be thoroughly checked by an ENT, preferably an oncologist. He knows his body better than anyone and if he feels something is wrong, he needs to insist on being sent to a specialist. The sooner, the better.

Good luck,

Rosemary
P.S. Feel free to email me if you want.
[email protected]

I am sorry to hear about your mother. I am in a similar situation as you.

My dear mum has cancer of the upper jaw, she was diagnosed around xmas time too. I understand how scared you are for her. I have been petrified. Every ache and pain she has, you think its spreading fast, but when mum had her MRI scan, it hadnt spread as bad as we had feared. So try not to fret, it might not be as bad as you think. (easier said than done, i know!)

I have been alongside my mum, being strong, being positive whilst she has had half her upper jaw and roof of her mouth removed in surgery. (but I would be a liar to say it hasnt effected me. I have often come home at the end of a day and wept into my pillow, devastated for her) I cant tell you it has been easy as it has been extreemly hard, but when its your mum its important to be there for her. We dont know yet if mums operation is a success yet,although we are staying positive. We are awaiting the results.

One thing I can say is you are right to make sure you look after yourself too. I made the mistake of not loking after myself, I ran myself into the ground, spending long hours at hospital and nursing mum when she came home. I spent ages trying to get things right for mum, the right food, the right medication, making her comfortable etc, but not eating correctly myself, not sleeping well, or resting, so as soon as mum started to recooperate from the op, my body decided it had, had enough and I came down with a heavy cold. (resulting in, I couldnt see mum all week, for fear of giving it to her)

So rest for you to is important. You can only help your mum, if you feel ok yourself.

We are both feeling well now and ready to face what ever comes our way.

I will think of you and your situation, please keep us posted.

I do wish you every best wish and love,
Kind regards Su
(janets daughter)

p.s. I have put a link in the new links section telling our story, so if you wish to read it, its labelled as 'do you have jaw cancer' and if you want to e mail, feel free to do so, I can understand how you are feeling, but I am not sure i can help much yet as this is new to me too and I am taking each day as it comes too.

Dear Su (janet09)

Thank you so much for taking the time to respond to my post.

My result of my mum's MRI scan showed a tumour 2.2cm in size. I am not quite sure what stage that is, but they were optimistic that they could treat her in some way.

In the end it was decided to perform surgery to remove 1/4 tongue in order to get rid of the tumour. They hoped that Radiotherapy would not be needed at this time.

Since then, my mum has had her operation in which nearly all of her tongue was removed and re-built. You can read my other posts regarding her progress in the currently in treatment section.

I so sorry to hear about your Mum. As you have already learnt, it is very important to take care of yourself too. Being a carer is hard work and it can as you have found, leave you shattered.

That is how I am feeling right now. Hopefully Mum will be home tomorrow so things may not be as hectic as they were dashing to and from the hospital twice a day (the hospital is an hour away from where we live).

My prayers and thoughts for you and your dear Mum Janet who has already been through so much. Wishing you both all the very best and good health in the future.

Take Care

Love

Kathleen.