Hi & Hello Everyone
I am in a bit of a state and maybe I am over worrying so a bit of background
I am a 55 year old woman and since I was a child I have been absolutely petrified of the dentist due to a very traumatic experience in the 70's.
Since then I have attended the Dentist but if my teeth felt ok I didn't go!.. Subsequently over the years I have numerous abscesses which have resulted in extractions. If I had continued visiting the Dentist then I am sure these could have been prevented. My anxiety begins in the waiting room, then it's the needle which sends me into a wreck, once numbed I am ok and I do this every bloody time.
Anyway late 2019 after having regular visits to the NHS Dentist he gave me a partial denture to compensate for the missing teeth, this was Xmas time in 2019 and once I got my new friend home I tried it and it hurt and I put it back into it's box
Into 2020 then Covid hit us and I felt one of my top teeth, which should have been supported by my new denture BTW, felt loose, this continued to be loose into 2021 and then I got an abscess which I had to have pulled out by an emergency dentist. At the time he said the twin tooth on the opposite side was a bit loose, again not supported by the denture.
Towards the end of 2021 this tooth was getting worse and very very loose, I could not eat on that side because an old crown had decided to fall off aswell!! By this time I had lost my NHS Status with the Dentist and I got another abscess in this tooth and my Dr gave me antibiotics, the tooth was hanging on by a string. The tooth fell out one Sunday with no trauma leaving me with just 8 teeth at the front. I cashed in a Pension early 2022 and decided to invest in a private dentist to sort my mouth once and for all.
In March 2022 my new private Dentist has put together a frightening dental plan but we both agreed my Gum health is priority before even thinking about having partial dentures again. She also referred me to the Periodontal Dr at the practice to address my gum disease which was last Friday 29th April
However I have been conscious of a "lump" on the side of my tongue for a couple of months now, so on the 14th April I got the last appointment before Easter to see my Dr, she had a look and took loads of pictures and said she would send off to ENT, as she was not sure what it could be, may be Oral Lichen Planus, but not sure. The lump is not bleeding, however if I touch it, it sort of hurts and stings when I do my mouth wash
Fast forward to the 29th April when I saw the Periodontal Dr and straight away when he was examining me he noticed the lump. He must have spent at least 20 mins examining this lump. I then told him about the Dr visit and waiting for a response. He urged me to find out if it was a 2 week referral, after calling the Dr they told me it was a regular referral and they would refer me to the Maxillofacial Clinic in due course and I felt a bit better.
Yesterday the Periodontal Dr called me and said he wasn't happy with the response from my GP and wanted my permission for him to put me forward for a 2 week referral, I said yes, but my anxiety shot up. He said I have a white patch on the side of my tongue and it is red inside. My glands are ok, there is no concern at the back of my throat, the rest of my mouth, cheeks etc are fine, it could be Oral Lichen Planus but he needed to be sure. About 3 hours later I got a call from the Oral Maxillofacial Clinic at Gloucester Royal asking if I would like a cancellation appointment today at 9am. I said yes of course
Saw the consultant, again he did a thorough examination of my glands, the back of my throat, inside of lips, cheeks etc and everything fine. However when looking at the lump he said he couldn't for sure say it was Lichen Planus or cancer and therefore I am going to have to have a biopsy, he also said my Dr should have sent the pictures to the Maxillofacial Clinic and not ENT. So he didn't give me a yes it looks like cancer but he didn't give me a no.
This is where I am now, typing this to you guys. I am a pessimist and I am convinced I do have it and I don't know where to turn now. My partner, who incidentally I supported through Leukaemia in 2017 ( and is now in remission ) came with me so he must be going through a lot of emotions now because it is me not him, and it is easy for a partner to be the "positive" one.
Has anyone else experienced what I am going through right now because I have consulted Dr Google and according to him I should be dead! Yes I know I shouldn't but what with my anxiety with Dentists in general, this is the worse place on my body ( or in I should say ).
Sorry for the ramble, I just wanted to get the story down in some sort of order x
Hi
You’ve answered your own question re Dr Google keep off it unless you know what you’re looking at. You’re not dead so as you say it’s wrong. Best advise my oncologist gave me was to keep off. 90 %of 14 day cancer pathway s turn out ti be non cancerous. If you like us on here are unlucky enough to join us. Remember oral cancers are highly curable I’m almost 4 years down the line for tonsil cancer and happily living my life. The waiting’s the worst none of us can diagnose you but we are all happy to help .
Sometimes it’s worse for our other half’s as we get all the attention All I can say is try to keep busy they are pretty quick with results these days once you’ve had the biopsy. Rant on here if you need to
Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi
You’ve answered your own question re Dr Google keep off it unless you know what you’re looking at. You’re not dead so as you say it’s wrong. Best advise my oncologist gave me was to keep off. 90 %of 14 day cancer pathway s turn out ti be non cancerous. If you like us on here are unlucky enough to join us. Remember oral cancers are highly curable I’m almost 4 years down the line for tonsil cancer and happily living my life. The waiting’s the worst none of us can diagnose you but we are all happy to help .
Sometimes it’s worse for our other half’s as we get all the attention All I can say is try to keep busy they are pretty quick with results these days once you’ve had the biopsy. Rant on here if you need to
Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Darcydoo. Welcome to our little community
Google is a great source of information but you have to know where to look.
The trouble is that you look to find something to convince you that you don't have cancer and the deeper you go the more stuff you find that's killing you. So I would take Hazel's advice and stop looking.
Not even your Maxfac consultant knows what it is. You're in the system now and whether the pictures went to the wrong department or not doesn't matter. You seem to have an excellent dentist, by the way and he has done the right thing by referring you quickly.
90+% of USC (Urgent Suspect Cancer) referrals turn out to not be cancer so hold onto that.
If unfortunately you do have a diagnosis it's an eminently treatable cancer and there are quite a few people here who have had curative surgery.
You're not there yet. Biopsy results should take two to three weeks and you'll know then
As for waiting, it's pants. Keep busy is all you can do
Best wishes
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Darcydoo
Welcome from me. We all understand your anxiety at this stage of the waiting game. It sucks, but as Hazel and Dani have said some 90% of referrals turn out to be something other than cancer. As an example I had cancer in my tongue and just recently found some white patches at the tip of my tongue. I was seen quickly and reassured that it was not cancer, but a benign cyst. Let us hope that is the same for you.
Your new dentist has been good. Hopefully you can find better trust with them in the future as no matter what your outcome is you will be a regular visitor!
Alas there is a clinical demarcation between Oral/Max Fax and ENT somewhere in the middle area of your tongue. This can cause confusion between clinical professionals that are not familiar with head and neck cancers, which are still relatively infrequent. However, you are now in the right place to get the answers and treatment you need.
As to being a pessimist; well to think you have it is better than to ignore it and hope it goes away with it eventually becoming too bad to treat. You've done the right thing.
Finally to reassure you I've had a number of biopsies on my tongue and I found they were relatively painless with a quick recovery afterwards.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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