Dentist

Amazing number of dentists don’t know. More hygienists do though I was told all invasive dental treatment has to be done in hospital. I have my radiotherapy plan from my oncologist and I know the doses different parts of my jaw received. I had 66Gy but only 33 to the area furthest away from treatment. That area is fairly safe but there is still a risk. 
The risk of ORN is lifelong. 
We need high fluoride because having low saliva we lose the protection it provides in a normal mouth. 
In addition I have a fluoride varnish every three months. So far so good. 
We also have to learn that refined sugar is a no no unless part of a meal. 
I brush and interdental brush before breakfast with Oranurse and thirty minutes after each meal with Duraphat 
It’s a lifelong commitment 

You do need 500 

Your dentist is wrong. 

Tell him to buy this for the practice library 

Thank you, Dani.  I will buy the book and read it myself.  I think I need now to be armed with the information to keep myself safe.  And thank you for the above information too.  I cannot get over how the dentist was simply going to take my tooth out.  An action that could have led to a life changing challenge for me.  We already have to contend with the difficulties that we have with eating, swallowing, taste, dry mouth etc.  I am really wary of my next appointment now and have very little trust.  But I have the conflicting emotions of needing to be polite yet also needing to point out to them the right course of action to take.  It's just another thing to battle with and I am very battle weary.  

Hi Poppy 722

As the wife of a newly diagnosed husband and A Qualified Dental Nurse I can tell you that most dentists would know that extractions of teeth whilst having treatment and post treatment could result in osteoradionecrosis,Just as patients having treatments with Bi- phosphanates for osteoporosis are likely to suffer with osteonecrosis. This is because the jaw bones esp the mandible cannot heal as it should while the immune system is suppressed. We always have discussions with patients to warn them of the risks of such treatments and whether the advantages outweigh the risks. 

Duraphat 5000 is recommended because of the lack of saliva in the mouth which can contribute to a higher risk of decay. The higher concentration of fluoride will protect the teeth along with  good oral hygiene brushing2x daily and spit not rinse so as not to wash away the fluoride. The use of a fluoride mouthwash is also beneficial but used at a different time to brushing as again not to wash away the benefits of the toothpaste. Some form of interdental cleaning such as floss or te-pe brushes is highly recommended every day. 

My husband saw a dentist at the hospital when he went for his treatment plan who is going to extract one of his upper molars as it has been giving him some problems in the past and as the tooth is root treated the prognosis is not good and it could flare up again whilst he is under treatment or after the treatment finishes. 

Hope this helps. Good luck with your journey. We are just starting ours and yes it is scary. X

Hi can’t add to the others but don’t fear your dentist be polite and explain to them you need the duraphat 5000 for life. I was told this at my very first appointment. I also have a fluoride varnish every 3 months don’t let  dentist fob you off with 6 monthly appointments you need sering 3 months. Luckily my dentist is married to an ex oral surgeon so she’s on the ball. 
hugs Hazel 

Hi Poppy

That was a lucky escape. It is a bit tricky having to tell your dentist what your consultant recommends as some can get a bit threatened by this.Perhaps they feel a bit inadequate not knowing the answer or thinking they do where it is not right for you.  I have a similar issue with my G.P. who is lovely but is definitely not experienced with some of the issues I now have. I try to tell her in a non threatening way the info I am trying to get over so she keeps on side. I have been with her for a while now so she is pretty good and willing to follow my request as long as I say that my consultant recommended it. She gets on her computer and looks things up while I am there to check on things.

I was lucky with my private dentist when I needed an extraction. Knowing my history he immediately referred me on to a specialist who then got in touch with my radiotherapy doctor to check about dosage etc to see if it was safe to do the extraction. I am now with the Dental Hospital so they have oodles of experience so no more problems.

We just have to keep advocating for ourselves and respectfully question our health professionals if we have any concerns. It is a bit tiring but goes with the territory unfortunately.

Best wishes

Lyn

Thank you so much for the information.  That is really useful.  I wish you well with your journey.  It's a difficult time for you all. 

Thank you RadioactiveRaz.  I read your blog back in February last year. It was really informative.  I took a lot from what you said but my focus then was getting prepared for the treatment.   I didn't at that time take in everything so there is something to be said to going back and having a re-read as our focus shifts throughout the journey.  Thank you again. 

Thank you, Lyn.  I think you've said it really well.  It's about having the confidence to say something at the same time as remaining respectful. Many thanks.

Hi Poppy  You're welcome ,even I read it back occasionally as we tend to forget. 

hugs Hazel x