Scan

Not a CT but an MRI. I would check that whoever is doing your scan knows your history and that you are looking for cancer. I’m not sure your private provider could tie in with your nhs ones. Ask? If they can then go ahead but keep your NHS scan appointment 

Hi , I got CT scan done private through my insurance last year after seeing ENT consultant also private ( he diagnosed me straight away ) , the scan was then sent direct to my first NHS appointment with nhs consultant . No issues at all and it speeded up my treatment plan

Hi... finding out from consultant wether he thinks appropriate, if it is he will send referral to clinic that is to carry out scan. It may not be the way to go but feel worth ago if consultant is ok with it. It's the waiting as nothing will happen treatment wise until known if cancer has spread. Macmillan nurse mentioned keeping NHS scan appointment open until we know best way forward. I may be panicking but any delays could have a negative effect on my chances to get well from this at the moment. Many thanks Shaun.

Thank you, that is good to know.  Many thanks again shaun 

Best of luck Shaun 

let us know how you go. 

Yes that’s a good way to speed things up at the beginning. The NHS were being tardy with my referral from GP so I had a private ent appt arranged. The nhs one magically appeared the same day. 

As ever thank you all for your replies. It helps to know not alone with this. That said I wish nobody had any experience of all this. Will keep updating as I go along this road. Many thanks again shaun.

Hi shcb..once I got into the NHS and during my diagnosis process they were great and really fast. When I was finally diagnosed I switched out of the NHS and got treated privately and then switched back into the NHS when the treatment was over.for my check ups etc. All my notes etc transferred without any issues between the various providers. I am now coming up to a year since treatment and the NHS don’t do a PET scan as a standard after a year and I am considering getting one done privately again which can be arranged with an email and a phone call. My situation is different but the motives are similar as we want to put our minds at rest and move on to what is next.  Regards T

Hello Montus 

Good to hear you are near at that 1st year milepost.

You can get a PET/CT at a year if you are enrolled in the PETNECK trial but the cost is self monitoring which is difficult for most people

Hi Dani… I am aware of the petneck2 study https://www.petneck2.com/ and have been asked to participate and am in the undecided box. Unlike the first study you will end up in one of two streams. Stream 1 would be stay as you are and go to the hospital for your regular appointments and stream 2 will have a scan and if you get an all clear you go onto a self monitoring program using an App. The reason behind the study is to find out which works best. For example some people get really anxious going for check ups and therefore maybe the scan and app approach might work better for them, whereas others will be concerned about not having regular check ups and being able to discuss issues in person. If for example a person is put into the self monitoring stream and they report a change in their condition they will go back into the 2 week cancer screening appointment fast track process.  Another objective which is not one of the primary ones is to also see which process is the most cost effective..

Me, well I suppose I am just awkward and want a scan for my own peace of mind and am quite content going for my appointments to discuss how I am feeling and if any of the treatment side effects are being a nuisance. I have to say since going back into the system the care I have received from the staff in the  ENT cancer unit and the dental unit in Oxford has been excellent. Anyway, I have written to my consultant about this expressing my views and asking for their opinion and it will be interesting to see what their thoughts are.

Regards

T