Hello, I have just been told that the biopsy from my neck lump is cancerous and they think it could be throat cancer. I have a sore throat and tongue. The doctor I saw said she wanted an MRI of my neck and also a PET scan of the rest of the body and I have an appointment in two weeks back at the clinic to discuss. I have already had the MRI appointment sent through for the day before my clinic appointment but no PET appointment yet. I am finding the waiting very difficult and already my throat and tongue are feeling worse together with the tinnitus , I’m worried that the PET scan won’t get booked and they’ll put off my appointment for another week, has anyone attempted to pay privately for a PET scan , and would this take me out of the NHS system ? I just want to know . I also read a post that said you should try to eat a decent amount of calories and avoid sugar and carbs - is this true ? Sorry I’m all over the place and can’t find any peace .
Hi and welcome but sorry to see you here.
It's good you are in the system and that MRI is booked. Please don't worry about the PET timing. There is a lot to do before you start any treatment. It will all come right in the end.
I was told that the best prehabilitation before starting a challenging cancer course is to get as fit as you can and pack on a little weight if you are slight in the first place.
The sugar thing is an issue in the realms of cancer stories, especially on social media. Sugar feeds cancer ... sugar causes cancer... It's pretty much rubbish. Modern diet is rubbish...that's more important so make sure you eat properly.
Cancer tumours tend to be hypoxic (ie they have low levels of oxygen circulating in them and there is evidence that people who are anaemic do less well so get fit, eat well and try not to worry.
Most of us end up not being able to swallow well or not at all through the latter stages of treatment and the liquid meal replacement we get are PACKED with carbs. It's hardly likely that we would get fed those if it stopped the treatment working is it.
I am now fast chasing 7 years after 6 weeks of RT and I am well....I'm bouncing with health
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thank you , that has really helped. I had some knee replacements last year and was anaemic then so I’ll try to up the green leafy vegetables .
Best of luck. Let us know how you get on. Hold onto the fact that this cancer has a very high cure rate. Xx
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I think mine has spread into my lymph node on one side though , not sure if this is good or bad , but I guess I just have to wait for the experts to tell me
ot sure if this is good or bad
It’s not bad. It’s the usual presentation of HPV driven cancer which has a better long term prognosis than HPV negative. Cure rates are in excess of 90%
The MRI is a long one, around 45 minutes so wear something warm and make sure you are well hydrated. The techies need to give you intravenous contrast
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Dani is right, the appointments will sort themselves out, don't be afraid to ask though. It takes a while to plan the correct treatment for your outcome. We have all been there. Please ask on here however daft you think the question is. I wish I'd have known about this group last year when receiving my treatment. One step at a time, it feels like ages at the point you are at but in fact it all happens so quickly. Good luck and keep us updated please.
Michaela
Thank you , I already feel better for these messages , and Ive literally just got off the phone as been offered the PET scan this Saturday now - not the birthday present I was expecting but I’ll take it !
Marilyn
just got off the phone as been offered the PET scan this Saturday now -
Excellent. Happy birthday though. The first day of getting better
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
You're having such a scarey time, I know. I went through very similar and I'm fine now. This forum was so helpful for me too. Good luck!
Catriona
September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Now over 2 years all clear. See my profile for longer story
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