Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

just diagnosed, what happens next?

pixie76
Posted by

Hi, Im new to the group. 

I had a branchial cyst appear end on july this year and it was removed October 11th.  I was called in last week to be told that the cyst contained squamous cells. 

Had PET scan on Thursday. I'm so so scared, how long do I have to wait? I don't know what happens next. 

Sorry I have no one else to talk to. I'm lying in bed trying to sleep but have all this constantly in my head. 

I'm ok if I'm kept busy but once im alone... I go to pieces. 

chris2012
Posted by

Hi pixie76, please do not get to stressed out as you must sleep, you are now on the system so things will start to move quite quickly. You should hear your results in two weeks max, only then will they tell you the plan of attack, maybe surgery and treatment,  just surgery or just radiotherapy /chemo. You are in safe hands now and will be well looked after during this period of time, we on this site will help as much as possible especially when they say what they plan to do. Please try not to go online a use "Dr Gooogle" as the information can be very misleading causing unwanted worry. If the not sleeping continues please go to your G,P as he might prescribe something to help you. You are most welcome to post on here as much or as little as you like, try not to worry, best wishes.

                                                                                Chris x  

Its sometimes not easy but its worth it !                Click here to find out more

Beesuit
Posted by

Hi Pixie

Chris is right you are in the system now and things will move as quickly as they need to.It's getting into that system that often takes time.

I know it's hard to be calm and you will be imagining all sorts of things.

PET/CT scans results are usually available to your consultant at around a week. You could always give his secretary a ring to see if you have already been made an appointment. It all depends how busy everybody is. These results may need to be discussed at a multidisciplinary meeting. These MDTs meet regularly and it also depends when they do. I wouldn't read anything into the time you have to wait. 

Look on the bright side. The surgery probably got it all. The PET/CT scan was just to make sure.

Good luck

I have a bit of a self indulgent blog. Look in if you fancy
Hellebore1
Posted by

Hi Pixie. I’m so sorry you’ve had this news out of the blue - the news you never want to hear. So the sleep thing - I completely understand and I was the same - didn’t sleep at all the first night, assumed I would be so tired I’d sleep the 2nd....and didn’t. Then I could barely function for work or family....its a horror. So - as Chris says, please contact your GP practice today - out of hours lines might be in place for weekend, but if you’re persistent you  should be able to get something. Zopiclone helped me enormously for a few days when I needed to sleep, not lie there musing on what my future held. 

The waiting for scan result, treatment plan etc is very very difficult. Limbo is a ghastly thing, but when you get your plan you will feel so much better. But please bear this in mind - on this forum we have all been where you are, and now we are here - talking to you, not 6 feet under, not in a hospice or whatever your worst fear is late at night. My treatment finished 2 years ago yesterday  - i’m Working, going  out with friends, cycling with my husband and planning to visit my student kids next week......life as usual (just about!) So although you are in a horrible place of uncertainty, have faith in the modern NHS - it manages cancer brilliantly - very fast and with compassion. You will get your treatment plan, have your treatment and then spend a bit of time recovering. So keep as busy as possible for now, do nice things, try not to be alone too much and get something to help with sleep. Sending virtual hug,

Hilary

pixie76
Posted by

thankyou both for your replies.

I was told the lump was the secondary and they needed to find the primary. The surgeon already told me last Thursday I will probably have more surgery then chemo and radiotherapy.

It's the not knowing. (I'm a tad impatient )

I have 3 kids under 10 to care for too. and 2 jobs. 

Beesuit
Posted by

Be guided by your team. Take every opportunity to grab what they offer. My nursing support team were wonderful and were always only a call away. If you end up having chemotherapy and radiotherapy it will make you quite ill I’m afraid. 
lots of us here have been through it and emerged scathed ( is that a word? ) but well.

There are few blogs in here too. I know had one as has  

If you Google Gamma Ray Gary he has a blog on Wordpress  these are all worth looking at once you get started  

Everything will fall into place once your plan is put together. 
good luck and hang on in there. 

I have a bit of a self indulgent blog. Look in if you fancy
RadioactiveRaz
Posted by

Hi pixie  this is Hazel aka RadioactiveRaz I a must niw 15 month post radiotherapy for tonsil cancer best advise take it one day at a time don’t second guess anything I have a blog which I think beesuit has directed yiu to its my experiences which we are all different but may help yiu with my time line of scans pet scans radiotherapy and chemotherapy.

keep off dr google unless you know and can dissect the info yiu will only scare yourself. I can assure u if that one. ! 

Yiu will have a good team round you n h s really are excellent once you get into the system.

re flu jab yes good idea before treatment starts I couldn’t have it last year due to pet ct scan being in January wasn’t allowed any live vaccines from end if treatment in August but will have it thus year. Explain to your mum that it would help you and her as if she gets flu yiu will have to put her somewhere until she gets Rid if it as you can’t afgird to get it it may jolt her into getting it ! Worth a try lol 

good luck 

hazel  blog www.radioactiveraz.wordpress.com 

RadioactiveRaz 

pixie76
Posted by

Thankyou. Mom is adamant she isnt having the jab, doesnt need it, she's stubborn. When she had pneumonia I was the one who had to look after her cos she refused to go into hospital... I was 14!