Dental extractions 27 years after head and neck radiotherapy.

Hi littlerosieuk,

Thanks for getting in touch and welcome to the online community, I hope you find it supportive.  My name is Barbara and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

I’m so sorry to hear about the pain and difficulties you have been experiencing.   Here on the Macmillan Support Line, we don’t have access to anyone’s NHS records and therefore are limited to general information and advice. 

After receiving radiotherapy in the head and neck area, there is an increased, lifelong risk of osteoradionecrosis of the jaw.  The risk arises because the radiotherapy can cause long-term changes to the bone and blood vessels, reducing the bone’s ability to heal and making it more susceptible to damage and infection.  The risk does depend on factors such as the total radiation dose, the location treated and how long it has been since treatment. 

Even many years after radiotherapy, precautions are generally taken for any dental procedures that involve the jawbone such as extractions. It is possible your dentist does not have a full knowledge of your radiotherapy history and the potential complications associated with it.

It is good that you have been referred via your dental hygienist and I can appreciate the wait especially while in pain can be distressing. Since your appointment with the oral maxillofacial surgeon is scheduled for late November, you may wish to try calling the department directly to explain the urgency of your pain. Sometimes cancellations or emergency slots can become available, and it is worth asking if an earlier appointment might be possible. 

If your pain becomes unmanageable or worsens you should seek emergency dental care through your local dentist or 111.  While they may not be able to perform an extraction without specialist clearance, they may be able to provide temporary relief or antibiotics if there is an infection. 

If you are struggling to get appropriate dental care your GP may be able to assist.  They can sometimes help coordinate care or expedite referrals especially if you are experiencing significant pain. 

I hope this information is helpful.  Please don’t hesitate to get back in touch with us if you need any further support. 

Best wishes,

Barbara G, Cancer Information Nurse Specialist.

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Our ref: Lrob/BG

Hi and thanks for the reply.

My dentist does not have my radiation records and does not understand the implications of radiotherapy. He is not willing to even consider that radiotherapy can cause lifelong problems.

He is wanting to extract at least one tooth but thinks I will probably need two extracting and says that they could be normal and routine extractions. 

I do have chronic infection but as I have had two courses of penicillin this year he will not prescribe any more.

The oral maxillofacial consultant that my hygienist has referred me to is a private referral although he is lead OMF at a hospital and the appointment has been put back one week as the dental practice where he works privately made a mistake and gave me an appointment on an evening when he is not there. I have rung and emailed several times but a dental receptionist has no understanding of ORN and I now have to wait until 29/11/24 just for a consultation.

In constant extreme pain and am struggling to even function but will obviously have to soldier on and hope for some kind of help at the end of the month.

Hello Littlerosieuk,

My name is Adele.  I am another of the Cancer Information Nurses on the Macmillan Support Line.

I am so sorry to hear of everything you have been through recently.  I can understand your concern about waiting until the 29/11/24 to be seen, especially considering the amount of pain you are experiencing.

As my colleague Barbara explained it is important that you reach out to your GP, or to NHS 111, if you have constant and extreme pain.  If you have not already done so, I would suggest that you ring them as a matter of urgency today, for advice and support.

There are many different pain killers available and it is important that you talk through, with either your GP or NHS 111, the extent of your pain, so that they can ensure you have adequate pain control, whilst you are waiting for your appointment.  They will also be able to check if anything is contributing to the pain at this time, for example another infection.

Sometimes it can be helpful to use a pain diary to help you verbalise the severity and the location of the pain.  This can also be useful in determining the impact of different pain killers and to work out which medication is most effective for you.

I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Adele

Cancer Information Nurse Specialist 

Ref AON/MD

Thank you for the reply. 

I would have more chance of getting a rocket ship to the moon than getting an appointment to see a GP.

GP will not deal with any dental issues and would tell me to see dentist.

NHS 111 tells me to see dentist.

Dentist tells me to get tooth extracted and radiotherapy is no risk of ORN only osteoporosis medications.

I urgently need to see oral maxillofacial with knowledge of radiation damage.

Dear Littlerosieuk

My name is Carla and I’m one of the Cancer information Nurses.

I am very sorry to read about the difficulties you are having accessing support for the significant pain that you’re experiencing.

I am glad you have an initial appointment booked with the oral maxillofacial surgeon through referral by your dental hygienist however I understand it is difficult having to wait until the end of the month.

I would encourage you, as Barbara and Adele have done to reach out to the private clinic on the possibility of accessing a cancellation or an earlier appointment slot.

Here on the Macmillan Support Line we cannot advise on medications, however your GP or NHS111 may be able to offer advice and prescribe appropriate medications to help to manage your pain while you are awaiting clinical review.

If you are having difficulty accessing your GP for a face to face, could you ask for a telephone or video consult in the short term?

You could also consider speaking with a pharmacist who may be able to offer some advice on how to best manage the pain. There are over 4200 Boots Macmillan Information Pharmacists around the UK who have been trained to understand more about the impacts, treatments , and how to support people living with and affected by cancer.

If you think it may be helpful to chat things over in more detail with one of the nurses, please do give us a call. We can often explain things better over a spoken call with the opportunity to ask questions. 

I hope this helps to guide you. Don’t hesitate to come back if you need anything.

Best wishes,

Carla, Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

REF:CC/UH