Just been diagnosed

Oh I am so sorry… but I know you were expecting it. HPV cancer is curable. My tongue cancer couldn’t be operated on either and I’m fit and well four plus years later. 
Stick with us. Lots here to help you through xx

Thankyou going to need a lot of help and advice over time . Going to be strong and hope for the best 

Hi we’re pluving oroif treatment works it’s hard but deffo doable. Once treatment plan in place everythjng else follows. HPV markers are good as points to curable wuestions just ask 

Hazel x 

Hi Draper I had the same news in 2020 base of tongue cancer and they thought it might have spread which it did to both sides fortunately I had just radio and chemo and 4/5 teeth out but got it all sorted.  just take one day at a time and you will be fine   X minmax

Thankyou , I felt quite deflated they were giving me a diagnosis based on 5 week old scan I've  had recent scans done this week just hoping no further change , I had a dental checkup 3 months ago anonly 2 things came up , teeth clean and a filling ...Will they do a filling or just take it out ? As the teeth I have are good . How do people feel after each radiation day and does chemo effect you more 

I had my diagnostic MRI in mid October but didn't start Radiotherapy till December 12th. I'm fine. It's not much of a delay. It won't make any difference.

Draper said:

How do people feel after each radiation day and does chemo effect you more 

You don't get many symptoms to speak of till the end of the second week of RT. I started getting a scratchy throat and the discomfort slowly ramped up till week four when I got. really uncomfortable and had to rely on morphine and be tube fed for 8 weeks. I had no teeth out. Some trusts seem to want extractions where they are in the path of the beam. I didn't have chemo so I'll leave that to others 

Hi you usually have ti see the dental unit to have teeth checked .My teeth are filled but I didn’t have any extractions as my teeth were deemed ok l. As Dani says  some trusts  seem to routinely extract teeth. Hopefully you don’t need any. Dani’s covered radiotherapy fir chemo my trust  did 3   sessions spaced out so my chemo days were every 3 weeks or so but I only had 2 sessions. Best advise take the medications as directed if you feel nausea tell them as we are all started off on the cheapest meds there’s others they can give. I was lucky had no sickness at all. Chemo is usually cisplatin you don’t loose your hair it may thin Radiotherapy we usually at the bsck loose hair where the beams hit. But as sooon as treatments over it quickly grows. Keep off dr google trust your team take it one day at a time. 
hazel x

Hi Draper

Sorry to hear of your diagnosis, it totally rewires your head to start with (I would go to the loo & want to ball my eyes out) but your positivity & the help of friends & family will make you beat this. The cancer teams are great & know their stuff so just let them do their thing & you concentrate on getting through it & better. 

Honestly you have got this ATB

It's been a whirlwind of emotions , I'm upset because it's took 3 weeks to get diagnosed the whole thing has been going on for 7 weeks and by the time treatment commences it will have been 3 months Scares me as I don't know the growth rate it is going all I know is I've a mass at the back of my tongue and its spread to lymthnodes and that was going off a scan 5 weeks ago

Hi Draper, I was diagnosed same 31 Jan this year. I met with my team next day and plan was curable with Chemoradiation. At that time I hadn't had the MRI or the PET scan, by the time they were done (2 weeks or so) my Consultant felt I should start with Induction Chemo as tongue tumor had spread over mid-line. It responded well to that initial Tr & then I went on to have Chemo-radiation. 

I had to have teeth extracted as the 'bone density' wasn't good enough. I was seeing my own dentist at that time and they said if she could complete the work on my other teeth before Radiation started I would be able to retain those teeth. 

I also met my Dietician that first day and she discussed a feeding tube with me (RIG) which I had inserted and have relied on heavily these past months. 

It's a hard diagnosis to receive & my family took it very hard too. I'm 13 weeks out now and recovering slowly. You can read more detail of my journey on my profile if you want, just press on the little armchair. Tina x