OSTEONECROSIS TWO YEARS AFTER RADIOTHERAPY

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I finished Radio at the end of February 2024. The lesions were inside my right cheek. I had extractions of my upper left and right rear molars AFTER the radio and was prescribed antibiotics as a precaution. The right hand socket did not heal quickly and it was only about 8 months ago that it was decided at the hospital that I could cease the antibiotics.

I've never been given the "all clear" as such but the last appt with the consultant repeated all the previous ones in saying "no evidence of necrosis".

I was a happy bunny at that point.

Two months ago I had sudden (not severe but concerning) bleeding from the site of this extraction over three days but it responded quickly to antibiotics and a strong mouthwash, and no apparent problems since. 

Some months ago I felt what I though was a bit of something hard in the socket but it seemed to disappear after a few weeks. I now assume it was a bit of bone, No pain anywhere at all since the effects of radiotherapy wore off.

However, two weeks ago I went for my regular check up with my own dentist and he spotted something inside my cheek, between the socket of the removed molar and the site of the original upper cancerous lesion. As a result he took x-rays and was worried about the apparent decaying of bone above the removed molar on that side. He therefore recommended me to get in touch urgently with my oncologist and I have an appointment for this coming Thursday.

I am naturally terrified that this either signals the return of the cancer, or is connected with radionecrosis or similar and the very limited options (some of which sound horrendous).

I know I have to just wait and see but wonder if anyone has any words of hope?

Just to add to my woes, my husband has developed mobility problems as a result of a significant worsening of his Peripheral Neuropathy and is undergoing tests for Parkinsons. He has been fairly immobile for 8 months but is now having regular physio at home and is now at least able to get out of bed (aided) and into a wheelchair, but we have carers coming four times daily (£1200 a week!) to help mobilise him. Basically I am saying that he has been my priority for all that time and I have neglected myself, which has included my oral hygiene. Obviously he will not be able to come to next week's appointment with me nor accompany me to any of the scans etc I might need and I am SCARED.

I am no spring chicken either at 75, but pretty fit and able otherwise and I desperately want to live to see my new grandchild born next week to my daughter who is 44. It's her first baby after FIVE expensive goes at IVF and I'd like to see it grow up a bit before I leave this mortal coil.

Trying to be positive - but I'm not.

MAD MEG

  • I am naturally terrified that this either signals the return of the cancer, or is connected with radionecrosis or similar and the very limited options (some of which sound horrendous).

    Oh Meg you’re bound to be worried but fingers crossed it’s neither. 
    There are medical treatments for ORN that do r involve surgery and many are successful 

    Hugs 

    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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  • Oh  deep breaths were all here for you as we were before if you  need us. So,sorry to hear about your husbands possible Parkinsons as well. Am sending positive vibes to you and yiur famiky and am sure you’ll get to see yiour new grandchild. I know a few who have been diagnosed with ORN  there’s some good alternative treatments around. As before keep off Dr Google it will only scare you. Let us know when you are able ro the outcome of your appointment.able 
    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  7years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Thank you Hazel and Dani, it means a lot. I am feeling very alone right now, realising that most of my long-standing friends have left this mortal coil and there is no-one around to offload at all to. Hubby is one of those "It'll be okay" people but I need someone to convince me that is likely!

    Fingers crossed eh?

    Meg

  • Hubby is one of those "It'll be okay"

    Yeah....I have one of those. Infuriating, isn't it? The thing is that he's usually right

    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 Meg mines a stoic Yorkshire lad his reply like yours and Dani’s is. It’ll be alright. Usually he’s right snd it us. 
    we’re here for you rant rave  laugh cry we’ve seen and done it. Hugs. 
    ps when’s grandbaby due ? 
    ours is 15 he was 7 when I was diagnosed I was afraid I wouldn’t see him grow up. He’s now almost 6 foot tall towers over me. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  7years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Hazel

    Grandbaby is due to be induced on 15th June - a week early due to daughter's age.

  • That’not to long  to wait. Sending hugs let us know how you get on and also when grand baby arrives. 
    hugs Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  7years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Dear all

    Apols for leaviing it nearly a week after my visit to the consultant but dear hubby has had some setbacks this week. He seemed pretty nonplussed about the apparent "growth" inside my cheek, put his headgear on, got a small pair of tweezers and gently and painlessly removed it - it was a (fairly good-sized) bit of root from the removed molar up above that must have severed on its removal two years ago - and not, as I feared, a potentially-cancerous growth!

    Even so, he organised an oral x-ray and noted a problem with the root of the adjacent molar, and recommended I had it removed sooner rather than later as it could well lead to necrosis. It has to be a hospital job rather than one for my normal dentitst, so I await an appointment. He did not discern any other issues on inspection and appeared to think it was all pretty minor in the scheme of things.

    He is also arranging a scan which is about due anyway.

    No sign of grandbaby yet - only a week to go according to the Bristol medics.

    Love to all, and thanks for being there for me.

    Meg xxx

  • put his headgear on, got a small pair of tweezers and gently and painlessly removed it

    Phew!

    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
  • A planned visit to my usual dentist today (for a LOT of work due to the damage done by the radiotherapy and my inability to keep on top of my oral hygiene) and whilst he was pleased to hear that the bit of "escaped" tooth had been removed so easily by my consultant, after a poke around he determined that there was more to come  out that was still hiding in the cheek.

    He was not impressed by the consultant saying that the removal of the adjacent tooth would have to be a hospital job as he felt it was well within his skill and knowledge to do it for me. I must say I have a lot of confidence in my dentist so this was something of a concern, but I have to wait and see what happens after the extraction.