Update

Beesuit said:

My oncologist always worked on what he thought you needed to know

Hazel7797 

I can give you a couple of examples 

I was booked for a neck ultrasound after treatment. I asked what this was for and none of the AHPs could throw any light on it. It wasn't until a frantic radiographer doing the scan kept looking at my MRI and wondering what the heck he was doing blurted out that the lesion he was measuring hadn't changed so was likely benign. My diagnostic MRI had spotted, as well as the cancer on my tongue,  a lesion on my thyroid cartilage which is part of the larynx. Nobody said anything at all. I buried my head in the sand over it and it remains buried to this day. Nothing seems to have come of it in the following five years.

My PET was booked between appointments that at that time were six weeks apart. Incredibly a slot was found straight away. I wasn't given the result till my next appointment five weeks later. I happily presumed no news was good news. Sadly the scan found a hot spot which thankfully was biopsied a week later and found clean. I suspect if I had been called in for a biopsy straightaway the result would have been equivocal and I might have been waiting for yet more tests. 

Both actions saved me a lot of worry but I sometimes wonder whether I should have been told. Hey ho!

Beesuit said:

A is monitor as you say. The consultant is happy with margins and I guess found no cancer in the lymph nodes so recommends no further treatment

B is split into standard 6 weeks RT and shorter 5 weeks RT

C is split into standard RT and standard CRT

If you end up in groups B or C then you are randomised

Thanks Dani that explained it clearly for me.  Do you still have to have checks?  Or is that finished now?

Hugs

Hazel x

I was discharged from routine review in March but I remain on the books and have my CNS contact details. If I’m worried about anything to do with the cancer I by pass my GP and go to the hospital. 
Don’t worry. Your time will come too. This cancer is curable. The treatment is pants but it doesn’t last long in the grander scheme of things. 
Hugs. 

Thanks Dani, that is nice to know. 

Hugs

Hazel x

Hazel7797 said:

I drew one of the short straws and got RT and CT. LOL 

Hi again

Pathos isn't reporting yet but other trials are. The most recent one is showing that gold standard CRT shows superior results in progression free survival so maybe you haven't drawn the short straw after all

Beesuit said:

gold standard CRT shows superior results in progression free survival so maybe you haven't drawn the short straw after all

Good to hear Dani.  Thank you.

Hugs

Hazel x

Hi Hazel 

you’ve not drawn the short straw CRT I’d the gold standard treatment it’s tried and trusted. I had 35 radio snd 3 of planned 3 chemo. My trust delivers the chemo is larger doses every 3 weeks . After my second dose along side my oncologist wd didn't go for the 3 rd Dose . It’s not unusual  not to complete all the chemo. 
mom over 6 years post and living a fab life todays been a rare beach day day typing this sat on the beach. 
you’ll get there. 

hugs 

Hazel x

Thanks Hazel, Dani said same.  It's good to hear.  I have my Pre-Treatment Assessment tomorrow, do you know what that entails?  What am I saying, of course you do.  The surgeon tells me what the next stage is but not what it entails.  I know I should ask, but my head is always reeling trying to take it all in.

Thank you for all your help, I greatly appreciate every one of you on here, without you all I think I would have crumpled by now.  The beach in Oct . . . WOW. Are you actually in the UK?

Hugs

Hazel x

Nope we’re over in

murcia southern Spain back home mid November. My motto is one life just live it and we do. 

pre assment there’s so many   You won’t have had your ask made yet ? Or seen any dieticians. I had scan wearing mask as a planning scan. 
nothing to fear over mask just breathe and think nice thoughts I’ll send you a video of mask being made if you want ? 
one of my pre assessment days involved meeting the radiotherapy team Quick Look round the unit then up to  chemo to look there. 
have you met your oncologist ? They work out with the expert radiologist s treatment plan and targeting. 
they may be blood tests. 
you’ll be fine. 
leg me know if you want the video 

h x

RadioactiveRaz said:

Nope we’re over in

murcia southern Spain back home mid November.

Hah, that explains it   Hubby and I were supposed to be over there right now.  Villanueva del Rosario (about 25 miles from Malaga.)  Of course that had to be cancelled.  Yes, please I would like to see the video of the mask being made (forewarned is forearmed as they say.)

Thank you so much.

Hugs

Hazel x