Good morning folk and HNY. feeling scared to death again. Post 12 months proton 33/2 chemo. Had all clear for hpv16 tonsil and lymph node cancer in March 23. Life cruising along until 3 months tooth trouble. Thought it was jaw inflamed then tooth infected. Had scans and diagnosed with osteoradionecrosis and they have indicated possible jaw cancer. I am devastated once again. I have oncology meeting at Leeds and then dental hospital weds next week. They are planning a biopsy. Worried to death.
Hi Shaun sending hugs and I too hope you don’t have to wait too much longer October is far enough away. I’ll do a bike ride for yiu next month when we’re back in Spain.
Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years 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
Hi Shaun
So sorry to hear about the osteoradionecrosis. That is such a blow after having successful treatment for tonsil cancer.
I had a right mandibulectomy and neck dissection in 2013 when I was 59 followed by radiotherapy. My journey mirrors Cazzita's with some slight differences as I did not have a free flap from my neck so consequently have no gum only a flat surface. Not conducive to a denture unfortunately. My mandible was not completely removed so still have a small bit of bone there.
Recovery still took a while and it was a good 8 weeks after my surgery before I started to feel I was getting back to normal.
Glad to hear that you are keeping fit as that will really help as the stay in hospital can impact your endurance. I used to walk up and down the corridors to get going and that did help.
Sending best wishes for your surgery.
Lyn
Sophie66
Good morning Lyn. Thank for contacting me and your best wishes. Yes things were just great until the issues with osteoradionecrosis started. Things really progressed after 3 consecutive infections and then a tooth extraction. Never thought I would want major surgery so much but the osteoradionecrosis needs treating. Thanks for replying and take care.
Shaun
Hi Chris. Hope you are well. I contacted you about 7 months ago and I discussed potential for surgery. As you are aware from the recent contacts I have osteoradionecrosis and require a fibula free flap mandible construction. I am hoping ypu can give some insight into the operation. I am a keen cyclist and runner and am hoping to return to these pursuits hopefully when I recover. I know everyone is different but any insights and advice would be much appreciated. My operation is scheduled for October. Hope to chat soon. Thanks.
Shaun
Hello Shaun
sorry your having to face another operation. I had fibula free flap surgery over two years ago for jaw cancer (see my profile) your leg will be quite sore for a few weeks but once healed you should be fine, mine is sort of ‘tender’. You will be back on the bike again so don’t worry about that. Sending you all my very best wishes.
June
Hi June. That's really good to hear in terms of cycling. I can't do any yet as my jaw is fractured and only held together with gum tissue so too risky to ride in case of a fall. Don't want to complicate things before my operation. Thank you for your reply it's quite encouraging as I thought I may have to sell my bikes.
BW Shaun
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