Newly diagnosed with oral cancer

Hi Seabee12 and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about the challenges your diagnosis is bringing.

A cancer diagnosis can bring a lot of stress, confusion and questions on all the family but talking with people who are on the same journey can help a lot.

Can I direct you to this link to our very supportive Head and neck cancer group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.

Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

All the very best.

Hi Thehighlander

Thank you for your message and for the information about support groups. I have joined the head and neck cancer group and will introduce myself.

There is a Maggie's Centre nearby and will hopefully pluck up the courage to get involved and also seek out Macmillan support.

I want to say so much but at the same time dont want to say anything. There are some truly inspirational people on these forums and hope to be as positive in the future.

Regards.

Great that you have connected - our Inverness Maggie’s is truly an amazing place for support at so many levels. Even although I am 4 years post treatment I still go to sit at ‘the table’ have a cup of coffee and chat to all the fiends I have made over the years.

The beauty of the Community is that you are anonymous and can open up in safety getting support and help from people who have walked the walk.

You will see that the site is organised into various groups so we do have lots of support groups that are Cancer specific  and also ones that are general Cancer experience groups.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names...... likeThehighlander

All the very best.

Thank you again Thehighlander, I'm trying to find my way round the different areas and will look to update my profile.

Great to hear you're years down the post treatment line and long may it continue. This is all new to me and feel at a loss as what to do, what to say and how to be.  There are so many group chats going on as I've scrolled through the site, although I've not read many, I get a strong sense and feel of community support and encouragement.

best wishes

I have a mental picture of the Community to be like a long Highland Glen and all the houses have their front doors open, a big fire going...... and a dram on the table.

You go in and have a chat with the folks who understand and get support and then the next house you get some more info....... there is no correct way to live this, you muddle through until you understand it better and the best way is to jump in and introduce yourself in the group.

Hi Seabee12,

Did you have a biopsy at the Dental Hospital to confirm what it was or did they just indicate what they thought it was?

I seem to be in a very similar situation to yourself.  I had a red patch over one tooth and was told by my dentist that I was brushing my teeth too hard.  This June I went back because the red patch appeared to be developing ulcers.  He measured all the pockets in my mouth and stated in this area they were 9.  Now I am a person that has always gone to the dentist, although there has been a couple of times where I have left it twelve months because I wasn't reminded.  Have never in my life not brushed my teeth twice a day.  Anyway to cut a long story short, on the 25th November after finally getting an appointment at the Dental Hospital and thinking I had gum disease and an abcess was told my mouth didn't look very good and was given an emergency appointment to see a Maxillofacial Surgeon.    I went on the 4th December and was told there was no easy way to put it that they most definitely believe it to be cancer and  told I would need to have jaw reconstruction due to the tumour I have.  I have had a blood test, ecg, biopsy and panoramic head scan so far and I have just phoned my Consultant's Secretary to chase up a CT scan because he told me to if I hadn't heard today and he is treating it all as urgent.

I wish I could give you the answers but all I can say is if it's any consolation I know what you and your family are going through. 

Have you received your appointment to see your Consultant yet?

I keep having to tell myself to stay strong.  My husband has had a huge wobble today and for the first time I can see how anxious he is.    There's so much help on this group and I know people have gone through the operation you have quoted.

Until all the tests are back I have no idea what the plan will be for me but I have now made another appointment to see him next week so shall have more of an idea.

x

Hi Mrs Wozza

Sorry to hear you are experiencing something similar to me and hope in time I can be of some help in the group as at the moment I'm so restless and can't think straight.

I have had it confirmed by the dental hospital last week, 6 days ago, and told it was Squamous Cell Carcinoma and that they will refer me to the Maxillofacial team and then it's a blur.   I was shocked and upset at this point and couldn't take in what they were saying. I remember bits and pieces but to be honest my head was all over the place.

Things seem to be moving a lot faster for you as I had a biopsy on 13 November and got the results on 3 December.  I've an appointment with the Maxillofacial team this Friday and have no idea what to expect or what will happen.  The dental hospital told me due to the size of the tumour the whole upper right teeth and bone will be removed and I'll have a palate.  Again all this was so difficult to take in, I really can't remember if they said any more.  Since last week there are painful lumps in my lower right gum that weren't there when I had the biopsy and results back.

I'm struggling with this and can see how hard this is for my husband, he is in bits, which is just killing me. I've yet to tell my 14 year old daughter as she is swimming up in Scotland this weekend and it's such a major event, she's been looking forward to it (she swims competitively which is so demanding - early starts, after school and travelling up and down the country for galas!).

Thank you so much for sharing your experience, I hope you hear back soon as I can imagine how anxious and worrying it is as I know how I am feeling.  I'm in awe of some of the stories and support there is on this and other groups, it really is amazing how supportive people you don't know can be.

x

Hi Seabee12,

The Dental Hospital said although they could do a biopsy they were signing me off and putting me in the hands of the Maxillofacial Consultant.  I've had a lesion on my gum since June it came about after a deep clean I had at my dentist.  I really thought he had damaged my gum.  It has been horrendously painful but he just kept saying they would laser it off but don't be surprised if it doesn't come back.  I went to another dentist privately, saw two dentists but because my dentist had already referred me to the dental hospital they wouldn't.  They still couldn't tell me if they thought it was cancer or not.  My dentist first referred me to the Dental Hospital in August.  I phoned them in September and was told my appointment could take 3 - 6 months. I began to think I was a wimp moaning.  I think my family thought I was being a wimp.  In desperation I went back October to be told my appointment should have come through but I had never received this appointment.  Because it was now over the 21 days I had to be referred again. When I eventually got the appointment through end of November, the Dental Hospital told me it was the first time they had received an appointment for me.  That afternoon the Maxillofacial Deptartment phoned me with an emergency appointment.

I know how you are feeling though about spreading, on the 11th November a swelling appeared it is just seems to be engulfing my teeth.  I have a slight sore above a tooth on my top jaw but my mouth was examined by the Consultant all over.

I will get the results of the biopsy next week.  When you are out of your mind worrying, know I am too. I believed my dentist I mean if you can't trust them knowing who can you?  

x

Hi 

Your mental picture sounds idyllic - makes me almost wish I liked a dram!

Thank you for you advice, I've started a chat with someone and feel in awe of the encouragement I've had in a such a very short time.