Risk of Osteonecrosis of the jaw

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Hello 

I was treated for tonsil cancer  5 years ago, chemo and radiotherapy and left with the usual problems with eating, my mouth being sore etc and stiffness of the jaw.

I m just finishing treatment for breast cancer and expected to start taking a biophosphonate tablet for the next 10 years to hopefully prevent cancer returning in the bones.

Thiese medications have a potential side effect of this osteonecrosis of the jaw.

I would like to ask advice as i believe after the original radiotherapy around the jaw we are already at risk of this? And worry that taking these tablets will be too much of a risk, as this is seems to be a horrendous condition?

I am due to see my oncologist in a couple of weeks, to start the tablets if i decide to go ahead. 

If anybody has any information or advice i would really appreciate it.

Thank you 

  • Hi Delis

    sorry you have been hit with this dreadful disease twice

    Regarding Osteoradionecrosis caused by radiation and by bisphosphonates; my understanding that although the two conditions have similar presentation they have a different pathophysiology. That means the way the syndromes are caused is different. I have no idea if one impacts the other so you have to have a serious discussion with your oncologist. It should be he or she who should give you all the info you need. Good luck with your decision and I hope you get fit and well. Perhaps you could let us know? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Delis. So sorry you are facing treatment for breast  cancer only 5 years after treatment for tonsil.

    I had tonsil cancer 2 years ago. I work as an Oral Surgeon so can give you a bit of info about the 2 conditions, although your team could give you more specifics about your particular risks. Beesuit is quite right that there 2 different pathways that could occur, that is, 2 different risks.

    1. The radiotherapy to the tonsil will have caused a high dose to be given to part of your jaws - mostly the back of lower jaw and quite a bit less to upper jaw posteriorly. This varies person to person but should be recorded in your medical records. The radioation affects the blood supply to the jaw here and means it loses its capacity to heal if damaged. Extracting a tooth causes “damage” to the bone and a dental extraction after radiotherapy can result in non-healing bone. Called Osteoradionecrosis. The risk is about 4% of patients who have high dose RT and although many cases occur after tooth extraction, not all do and sometimes it happens “spontaneously”. 

    2. Taking a bisphosphonate medication protects the bones from possible future spread of cancer to the bones(used for specific cancers and risks, not usually for tonsil) but it does have an effect on the ability bone have to repair themselves following damage. And guess what? - extracting a tooth runs the risk of  getting non-healing bone if you have taken a bisphospohnate for a while - months to years. Stopping immediately before an extraction (probably)doesn’t reduce the risk. But the bisphosphonate affects all the jaws, although risk is higher for lower back teeth and difficult teeth. This sort of non-healing bone is called(wait for it) Medication related osteonecrosis of the jaw - MRONJ for short.

    You could be at increased risk, if you start a bisphosphonate, of non-healing bone in the area of your jaw which received the radio for the tonsil treatment, but the risk remains highest if you need to have a tooth taken out in the future. So what to do? A discussion with the Oncologist about the risks and benefits of starting the bisphosphonate. More importantly, before you start it (if you do) make sure you have had a very thorough Dental Check up and explained what drug you are going to be taking. Ideally this should be with the hospital Restorative Dental team (who saw you before you started Chemoradio), but a good dentist would do. Your mouth needs to be in tip top condition before you start the bisphosphonate and I would strongly advise that you become just a little bit obsessed with your dental health and cleaning as well as sticking to a strict low-sugar diet ongoing. You just don’t want to need to have any teeth out in the future. 

    Sorry to go on and I hope I don;t sound like I’m lecturing - just want to give you as much info as possible so you can talk to your Oncologist and ask some questions. I appreciate that is seems like a difficult decision, but get more info so you are comfortable, whatever you decide.

    Best of luck and hope you are recovering from your recent treatment

    Hilary

  • Hi Beesuit

    Thank you so much for your reply,  that has really helped me,  i didn't understand that there are the 2 different types/causes.  I have been able to research more now. As you say i need more information from professionals aswell. 

    I 'm guessing that my decision in the end will just be trying to balance probabilities and fears, preventing cancer returning in the bones or necrosis of the jaw 

    Thank you again and I ll update with any clear information i find.

  • Hilary’s reply is excellent as ever too

    Good luck

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Hilary 

    Thank you for your reply,  that is exactly what i needed to know. So clear explained for me. I believe that is more than my current breast care team know on the subject.

    I really appreciate that you have taken the time to reply and help me out, i feel confident now to speak to the oncologist, my dentist,  and if needed get myself referred back to hospital dental team ( and you are right about quitting the sweet stuff...i ve been sneaking up my intake of cakes with cream lately!)

    i wish i'd posted the question earlier rather than than worrying without the correct information! 

     Thank you again,  and all the best with your recovery 

  • FormerMember
    FormerMember in reply to Delis

    Hi, I had mouth and neck Cancer live in London. Al my teeth roted but they could not rake them out as I did not know at the time was not told had Cronosis in my right jaw. This meant I could not have implants and now left with the dentures. It makes me angry after Nearly 20 years I still cannot have implants. They also cut if part of my tongue so eating difficult even now. Glad to ve Li e no I am jot before someone says I am. 

  • Hello

    I am just giving an update to my  question about risks associated with taking biophosphonates. I have decided to take them, balancing the help they may do outweighs the risk. The oncologist said  that one of the problems is there is no research in this area really.

    Thank you for your kind responses and advice 

    Adele x