Dentist advice please

Hi. There is no "situation" apart from making sure that your dentist has your history and that if you have had radiotherapy you are referred back to your hospital for any invasive treatment such as extractions.... though root canals are generally OK.

You may wish to change dentist but you may indeed be fine to stay with your present one, especially if you still have confidence in them and are under NHS. It's likely that they have made changes to their continuing development after missing your cancer. Though I have read horror stories where cancers have been missed/ignored for many months or years. I suspect this is not the case here though?

If you have RT you need a high fluoride prescription for life and six month check ups. Do insist on this. Some NHS are extending routine check ups to more than a year.

I also have a fluoride varnish every three months but if you use duraphat and don't snack on sugary foods that is probably just a cherry on the icing

Hi Dani, I had actually been in regular contact with my dentist about that area of my mouth. I had an open lesion from around July and he said it would heal. On the 1st October I contacted him again as my gum was really bothering me.

He saw me on the 6th and removed another tooth. I asked him about the gum and he said it would heal. I was due to see him 6 weeks later but rang after 3 to say how concerned I was with facial swelling and the gum still not healing. I saw him on 4th November when referral was made.

I am upset that he hasn't been in touch with me despite knowing I have stage 4. He just removed the remaining tooth and said the flap would heal.

The reality of the delay is really hitting me now.  I have no movement on the left side of my face and never will. 

Your last post included a photo which isn’t allowed but I can give you an answer pro tem

Regarding the practice contacting you…..Have you been in touch yourself? I have a forum friend here who did confront her dentist after a delayed referral. She told him she didn’t want to sue but wanted to make sure that in future the practice was up to date with its CPD and that all the dentists and hygienists were aware of what oral cancer looked like. 
It took a lot of courage but she did it and felt all the much better for it. She was assured that the practice would act and indeed they have 

Hi, I didn't know photos weren't allowed. I saw the option on the thread and assumed they were.  I think the path your friend chose maybe the one for me. I don't want to sue either. I am aggrieved that he didn't listen to me and this is causing me a great deal of angst. Thank you for your feedback.

MOYZ672acb said:

Hi, I didn't know photos weren't allowed.

Sorry I should have phrased that better. Photos of body parts 

MOYZ672acb said:

I am aggrieved that he didn't listen to me and this is causing me a great deal of angst.

You will need some time for your feelings to settle first. I’ll tag Stessy. I’m sure she won’t mind joining in with her thoughts.Panch 

Thank you

I’m the lady that Beesuit  mentioned.

For me it was all during Covid, so I wasn’t able to see my GP (who I think would have referred me immediately) but my dentist did see me, and said he could see nothing; a lot of pain, antibiotics and steroids later, I went back and he could still see nothing, despite my tongue splitting open from a 4cm tumour! He said I might have a bit of a sore looking tonsil……. But at least I got the referral.

Afterwards I got a recommendation from a neighbour (who also happened to be a MaxFac consultant) for a different local dentist and they have been very caring and careful with me.

No I don’t think I could go back to my original guy BUT about 12 months later, my daughter had an appointment there, so I went with her to tell him what had happened.

I’ve just found the video I made afterwards - I said I wasn’t going to report him, I wasn’t going to sue BUT I did want him to redo his training and NEVER EVER miss one again.

I got a long letter back; I think he was devastated to be honest.

I think the way I eventually processed it was that it was impossible to turn back time and that he certainly wouldn’t have knowingly dismissed something.

The only thing that I can do in the moment is raise awareness, make sure that women particularly are no longer told “you’re too young” or “you’re not high risk” - so it CAN’T possibly be cancer. That older, male alcoholic smoker profile has changed.

So many tumours are HPV driven, but there’s also a significant minority who don’t fall into that category; many at a stage where the autoimmune system is compromised - from existing ailments, medications and in fact, pregnancy!

Deep breath; it’s up to you when you’re ready to process what you’ve been through and whether or not you’re prepared to let him near your mouth again.

If he has actually been informed, he is probably feeling utterly sh** and has no idea about what action might be appropriate.

There’s no right or wrong; but it’s sadly far from uncommon xxx

Happt to chat further if you want xx

Thank you for that. It’s such a wonderful reply. I checked out your video. What a brave lady ! 

Thank you Panch. I think as I am approaching my chemotherapy and radiotherapy it is becoming more real.  I have been really positive and strong so far but I am at the stage where I keep reflecting on how often I had called him,  how I had infection after infection, a huge abscess, then the extractions with no improvement and finally the gum splitting to reveal the tumour and still he did nothing other than to say it would heal. I can't help thinking that if he had listened to me all those months ago then it may have been treatable without my face becoming paralysed. I think I will try and put it aside for now,  get through CRT and then make a decision. Any conversation that I have with him at the moment is going to be very emotional. Thank you once again.

Oh sweetheart. I do know - I promise.

Those five or six weeks might well have meant that I wouldn’t have needed the Radiotherapy and that would have been huge.i could feel the tumour growing almost daily and the pain was awful as it split through more flesh.

It’s horribly common unfortunately. Even a hospital doctor friend that I know went back and back and back to her hospital consultant and they simply wouldn’t believe that there was an issue.

She talked about suing, but ultimately that anger isn’t helpful in your “now”. 

Now, all your energy and focus needs to be selfish; work on staying as healthy as you can; eating the best you can, resting, self-advocating so that you can make the best possible recovery for YOU.

Take your time, give yourself grace. There are no right or wrong emotions. I took a good 12 months to even allow myself to properly acknowledge what had happened to me. 

Feel free to PM me if you’d like x