My cancer 12 years ago gave me a good overview of how the system works and I have now spent the entire day fighting it. I got somewhere though with my usual tactics of polite patient persisting. I called the MaxFac emergency number this morning to report discovering things which I know are a red flag for my tongue cancer returning. Told them I strongly suspect cancer in the jawbone. Tell them I think that is what they are quietly investigating. They are whisking me into too many different sorts of scanners, and they carried out way over the top tests in readiness for the routine minor op I had yesterday. I want an honest conversation and I want it today.
To cut a long story short finally they phone and tell me that they suspected I had ORN and the final scan yesterday confirmed it. They were probably still working out how on earth they were going to tell me. I'd made all that fuss to stop my dentist pulling out my infected tooth as I was so scared that might make me prone to developing ORN, but I've already got it!
OK I say, but what about the tongue cancer red flags? She says it's a known side effect of ORN. OK I say, but I want it urgently checked anyway. To which I am told to go back to my Dentist and get him to send a 2ww referral to Head and Neck. I politely, but very firmly, explain that is not acceptable. Then she says I can self refer to H&N through my Macmillan nurse if I'm still having annual reviews. I point out that I am not and she agrees I'm no longer on the system. I keep pestering till eventually she gives in. I have an appointment with a MaxFac Consultant at 9am tomorrow.
Oh Margaret I can feel the bewilderment at the anger and frustration you are having to cope with and all I can say just now is bloody well done you!!!!!!
When you said there was a shadow on your jaw yesterday I suspected it might be ORN and that in itself isn’t that horrendous especially if you can get yourself on a PENTO or PENTOCLO protocol.
Maxfac will deal with your other symptoms pretty quickly hopefully to reassure you it’s not cancer.
If your Maxfac isn’t forthcoming get referred to Vin Patel at Guys.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
There are a few threads on ORN here with some good results.
https://community.macmillan.org.uk/search?q=PENTO#serpq=PENTO
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Then she says I can self refer to H&N through my Macmillan nurse if I'm still having annual reviews. I point out that I am not and she agrees I'm no longer on the system.
By the way. She is wrong. We are never discharged just taken off the list for routine review. My oncologist has always told me that if I suspect I’m in trouble I am to get in touch with my CNS and I will be seen.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
