Hi everyone.

SCC just diagnosed a few days ago. After seeing three doctors and two dentists in the past two months, finally my dentist referred me urgently for biopsy. None of them mentioned the C word even if I now know that my symptoms are textbook: major ulcer - no obvious cause- on cheek, doesn't heal in three weeks.

Never had a mouth ulcer before. Risk factors: male, over 40, visible lichen planus (white patches on mucous membrane of mouth) Family history - my dad had tumor on the same spot recently.

It all started 6 months ago when I felt something extra on my inner cheek: sometimes I felt a little bit of pain if hard piece of food, like carrot, was pushed against the cheek.
I didn't think much of it as most of the time it was completely asymptomatic.

I couldn't even imagine it could be something serious. I quit smoking years ago, I eat loads of fresh veg & fruit every day. Haven't had cold, flu or even headache for a very long time.

Two months ago I felt serious pain in my mouth and finally took a look inside. There was a hole on my cheek 1cm x 1cm and maybe 5mm deep. I had no idea what it was but the pain was similar to intensive tooth ache.

I got an emergency appointment with my GP the same day. He prescribed Orabase paste and said it should take care of it. Well it didn't. I went to another GP and she said it's probably the wisdom tooth causing it and referred me to a dentist.

The young dentist's first reaction was to refer me to biopsy. Unfortunately I wasn't thrilled about the idea and she then asked the senior dentist to come over and have a look. Again, unfortunately, he said that smoothing down the tooth + Corsadyl mouth wash and rinsing with salt water should do the trick. Well you already know it didn't. Oh how I wish she had been more adamant with the biopsy referral. Finally she gave up and went with the smoothing the tooth + mouth wash "treatment" I think she already knew I would be back soon.

After about a month I went back after having tried many different remedies for mouth ulcers to no avail.

All this time I'd searched info about mouth ulcers, nobody mentioned the C word and I was just wondering why I couldn't find a single photo similar to my ulcer.

I went back to my GP to get some better painkillers as the pain took over my life. Again, he didn't suspect anything was wrong even if the ulcer hadn't healed in almost 6 weeks.

I went back to my dentist and this time she referred me urgently for biopsy and urged me to go staright to A&E where they asked me to go staright to oral surgery department. The consultant wouldn't see me staright away, instead they would call me in 2-3 weeks to arrange an appointment. I went back after two weeks. The consultant had a look, asked a few questions and arranged immediate biopsy right there and then jaw/teeth x-rays.

I got the results back last week and it turned out to be SCC. Now I'm scheduled to have CT scan this week and consultation right after.

Before the first appointment at oral surgery dept. I went to another A&E because of the horrible pain & bleeding. The doctor there had a look in my mouth and said that he can't refer me to biopsy urgently because it's not life threatning and besides "You've already had it for months so what's the rush now?"

I can't believe that all three doctors and senior dentist failed to recognize the textbook symptom: ulcer that hadn't healed in three weeks - and no obvious cause.

The ulcer is now three times bigger than just a month ago, ever so painful, produces red-brown ish secretion constantly and smells like meat gone off.

I have to take Co-Codamol, Tramadol, paracetamol, ipuprofein or aspirin 24/7 every 1 to 3 hours. I wake up at least twice a night because of the pain. I take different pills to avoid side-effect accumulation ( they all cause different ones)

I don't know yet the grade or stage of the growth, should be wiser in a few days after the CT scan and further consultation.

All I can say at this point that somehow the awareness of cancerous mouth ulcers should be better amongst health care professionals.

Loads of love and support to everyone here.

The treatment you have had makes me angry to the point of tears. We do our bit here to bring awareness to mouth cancer but it makes me feel like knocking on every Dentist and Doctor's door in the country. It is difficult to believe such negligence and now you are made to play the waiting game.

Well, now that little rant is over,welcome to one of the worlds most exclusive clubs which I am sorrry you have had to join. You will receive warmth and support by lots who own the same tee shirt and have all been on the same roller coaster.

Good luck and keep us posted on your progrees

Angie

Hi and welcome
your story is regretably all to familiar i am afraid.and dentists in particular have absolutely no excuse as they have rigid well documented guidlines.My husband and i reported his dentist to the GDC and they did a two year invetigation resulting in him being found guilty of gross misconduct which was all well and good but of little help to my 44 year old husband who had been dead for 12 months before the case got to court.
Its a never ending battle which is why sites like this are invaluable.Here you will get support and information as you journey through the minefield of treatment and whatever you do don't suffer pain,its just not necessary.keep shouting till you get some help.

Hello JMcase
Your post serves as a reminder of our need to be able to trust the health care professionals into whose hands we place not just our health but our lives. We're the amateurs, we don't have the knowledge they do. We have to know they will be in there fighting to get attention at the very first sign of 'something'. What a shame the young dentist didn't have the confidence to stand up for what she believed was a situation requiring urgent attention. I hope she will always and forever go with her gut feeling as a patient advocate.
None of this helps you at the moment. You must be sure now that you are your own best advocate. Do not sit still until you are satisfied that everything that can possibly done to expedite your treatment, is done. You have seen that no-one cares about your welfare as much as you do. Fight the fight and get the action you need.
You will get answers, support, love and friendship on this forum. I wish you well and encourage you to post at any time with any question or concern or maybe just when you have a need to off load. We are all here for you. I'm sorry you have had to come on board.
Best wishes from Down Under
Deborah

Hi again and thank you for your support!

I have no idea what is going to happen now. I've been keeping myself busy the last week trying to find out as much info as possible on the subject. The consultant who arranged the biopsy a week earlier, pretty much just told me the bad news and rushed me out of his office. Then someone came with a form and told me to go to the x-ray department and book the CT scan.
I can't believe the way the news were delivered. I tried to ask something but didn't get any good answers. Well I was in a bit of a state, felt a bit like a half zombie.. I was told that the next consultation with E,N&T will be next Thursday.

Off I went to book the scan. They said that the first available date is in December. That was the point when I got myself together and woke up. "That is not acceptable" I said. "I've been just diagnosed with cancer after being referred back and forth for two months without any results - I've lost enough of valuable time and I need the scan results BEFORE the consultation. I had to go back to the oral surgery department and drag one of the nurses to explain that my case is urgent!
They promised to call next day as they needed the supervisor to sort this out. Luckily they did call me and now the scan is right before the consultation in the morning.

I would like to be prepared for all options but it might be better to find out the grade and stage before shi***ng my pants

Well people are mostly afraid of change and there's a good possibility that this might change everything.

My young friend (in his thirties) had cancer on his tongue a few years ago and after surgery and RT he was fed through a tube for almost a year. Another friend had it on his tongue as well, after a year and a half it came back with vengeance, went straight to his lungs and got to his spine, it was over in two weeks. Pretty heavy stuff. I still remeber the funeral like yesterday, very beautiful and at the same time very sad ceremony, he was only in his early fifties and they had just bought their dream summer house on the south coast.

I know that we can't change the past but I still can't help thinking what would have happened if someone would have said the C word when I got the first tiny symptoms months ago. People are still too afraid even to mention it. Even when the pain took over two months ago and the ulcer wouldn't heal regardless of all those remedies I tried and I tried them all!!

Like myself, I didn't even consider the possibility even if there had been three cases of mouth cancer close to me within the past three years, one of them being my dad. He's recovered now, fingeres crossed.

It seems that most people here have had the cancer on their tongue. Anyone out there whose ordeal started as a single ulcer on the cheek?

I suppose I just have to face this beast, find out my options and plan the nearby future accordingly.

I have so many questions in mind that I better leave them for later when I know a bit more about my condition. In the meantime I go to work normally and watch loads of comedies between popping the painkillers By the way, I found the balance between horrible constapation and full on runs: just one tiny ASDA constapation pill twice a day after meal and at least three plums in my smoothies twice a day. Yesterday I took two of those pills after having increased my codeine intake. Not a good idea, I almost had a very liquid accident twice today, luckily I was very close to the john I remebered this song from one of the Chevy Chase movies: "When you're sittin' in your chevy and your pants are feelin' heavy..."

I swear I can feel the bas***d slowly growing, it's those few seconds of sharp pain right in the middle of the ulcer.

I bought an electric toothbrush last night. The hard edges of the ulcer rest now against my molars and this makes it impossible to get a normal toothbrush in between there.

Does anyone know for how long does it take from the diagnose (biopsy results) to the first treatment in the UK / NHS ?

Bless you all !!

Phew, good man for standing your ground. I am afraid you have joined the worst possible queue, the waiting for results which when you think about it, must take some time to process but it is usually about a week then its up to your hospital when your treatment starts but the wait isn't usually long.

Good man.which hospital are you being seen in?

Rob was seen (eventually)under the two week rule on December 8th.He had a fine needle biopsy,tongue tumour removed,MRI scan,multidiscipliary team meeting,and bilateral radical neck dissection all completed by January 13th.He started radiotherapy in March and completed on April 13th.That sounds quick i know but believe me at the time it seemed an eternity waiting for each significant day to arrive.We were seen at the Royal Surrey in Guildford which thank god has its own dedicated cancer centre.Have you thought about asking if you can be seen at the Royal Marsden or even Saint Bartholemews?

I received my biopsy results (my cancer was to the tongue) back the following week after consultation and was immediately admitted as an inpatient for five days to have a bone scan, CT scan, X-rays, blood test and lung function test.

The waiting time between biopsy result and surgery was approximately four weeks. I then started a course of radiotherapy treatment approximately two months later. In my case, I have the utmost of praise for the treatment I have received throughout as an NHS patient.

The waiting time in between is the worst.

Wendy

My case is very similar to yours,SCC in cheek,history of lichen planus,symptons missed by 2 doctors and a dentist,when it was finally diagnosed i was booked in for an op 2 months away as they said it woudn't get much bigger in that time,like you say you can feel it growing everyday,when i had another appointment 1 month later they were taken by surprise at how quickly it had grown and done my op the next day.
Hope things go well.

Scott

Hi JMcase

Nothing surprises me! I had a neck lymph node swollen like a golf ball for 6 months before my cancer was diagnosed. A branchial cyst said one totally incompetent registrar.

The rest ,as they say,is history!
As I have mentioned in another thread - once the cancer was diagnosed the speed of movement was excellent - my care was excellent. Big shame about the "lost 6 months". It could have saved the NHS bucketloads.
Aspects of my life have been traumatic since the cancer. An early diagnosis may have altered some parts of it.
I have been lucky since - a 5 year survivor this dec 22.
I had a major scare after 2 years. I saw the ent consultant personally that week who gave me an immediate appt for a ct/pet scan in london within a week. Results the following week. All clear and a HUGE weight off my fragile mind.

Tony K

Hi, my SCC started in my gum rather than cheek but after a lot of pi**ing about by my dentist I had the biopsy etc etc etc.
Even though you're going through the ringer at the moment try and think positive if you can, I'm sure it helps.
Also, if you aren't happy with what you're being told or how you're being treated then start making yourself heard. I went through 3 counsellors in the early days because the ones I was referred to were useless to me. I only got proper help after I kept making drs appointments and moaning at him a lot.
Good luck with everything.
Hagg.

Hi,

just a quick update. Got the CT scan results. It hasn't spread yet and doesn't seem to be particulalry aggressive. More scans and consultations on the way. I've done a lot of reaserch on the subject and am not too afraid anymore even if I've seen first hand how fatal mouth cancer can be.

Love and peace !!

Hi JM
Sorry you've had to sign up to the club no one wants to join. Like you, I had an ulcer that wouldn't clear up. Stupidly, I put off going to see anyone about it for some months. This turned out to be cancer of the lower gum (and had spread to the jaw bone), upper palate and lymph nodes in the neck. 31 hours of surgery later, followed by 6 weeks of radio therapy and chemo therapy - plus 4 months of being fed through a tube, I am happy to say life is relatively normal. Very few side effects, apart from a dry mouth at night, and eating more or less anything. I hope this gives you a little encouragement to know there are many of us survivors out there - and everyone here will give you all the support you need. I only wish I'd know about this site when I was diagnosed. Good luck with everything - we're all thinking of you.
Love Dian x