just diagnosed, what happens next?

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. 

  • 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  

  • 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

  • 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,


  • 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 Grin)

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

  • 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. 

  • 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 

  • 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! 

  • Hi Pixie, if you are fit and strong and positive you will cope with your treatments whatever they are. You’ll likely have surgery and then adjuvant RT if needed. They like to sometimes combine chemo with RT as it makes it more effective but many consultants consider using all three treatment modes to be a failure. in terms of work and kids, I had a trans oral tonsillectomy and a neck resection. They only entailed one overnight stay and then I was back to work! (I don’t have a manual job though).

    There is a wealth of treatment available to you, and cancer is absolutely prioritised in the NHS. And don’t forget your prescriptions are now free!

  • Crikey trickycycling!

    Ive just read your bio and I’m full of admiration

    well done you! 
    I was absolutely poleaxed by my treatment so it’s really good that some folk get away with little discomfort.   

  • Hi, thanks for your note. I wouldn't say 'little discomfort'! I guess the pain threshold is reasonably high from being a lifelong athlete, and crashing bikes a few times! The neck and mouth are really nasty, and eating is a real chore. But I'm going to bed early and try to always have something to get up for. Now the routine of daily RT has finished I found today difficult to get going. But I'm back to work full time tomorrow so hoping I can then just push through whilst hopefully the side effects subside. TBH I kept training through RT so that I would know if I was getting fatigued - I don't know about you but it is easy for me to feel tired just by mooching around the house. It's only by turning the pedals that I can tell if I'm genuinely fatigued. I kep riding through RT thinking that the tiredness might come, but it never really did. The mouth and neck did get bad after a couple of weeks though!

  • I've just had my results and they still cant find the primary source so they're throwing all they have at it and I'm being sent to Oxford to possibly have what's left of my tonsils removed.  Then the radiotherapy. He has told me to prepare myself for a bumpy ride. 

  • Hi Pixie

    i guess they will be throwing lots of xrays at you. Hang on in there. Sometimes the body deals with the primary but not before it’s metastasised to a lymph node which is why they can’t find it. 
    Following on from what Tricky said above, I was advised to try to get out and about to combat fatigue and that does help for sure. 

    My pain threshold is pretty poor ( I get Girl Flu) so when my mouth got sore I lived in a morphine fog for a while. 
    Good luck and best wishes. 

  • I dont have any symptoms. 

    I had a full body PET/Ct scan.

    I'm not good with pain either.  I have 3 kids under 10 so its difficult to get time to myself.

  • Hi Pixie, that’s the weird thing about cancer. You don’t feel ill, at least early on. I was competing in bike races right up to my surgery!

    You’ll get a consultant appointment no more than 2 weeks after your PET/CT; often within a week. They are trying to find the primary tumour and also see if any cells remain from your cyst removal. 

    The consultant will let you know what they find. Please don’t worry - the NHS cancer treatment is prioritised and everything happens quickly, and if you need treatment they’ll work out the best approach taking into account your lifestyle. 

    Did they give you a contact number for a cancer nurse to speak with?

  • they did, I think. 

    My Dr is sending me to a specialist in Oxford because we dont have the tech in Telford/Shrewsbury to do the required surgery. I had my pet results today. they showed nothing. 

  • Hi pixie76, let's hope they manage to sort everything out for you and you don't have a to bumpier ride. It all sounds a bit complicated but I'm sure it will all come together. Here if you need help or advice, good luck.

                                                                                             Chris x

  • Where are you going, the Churchill or JR? you will need to allow plenty of time for parking, at least 1/2 an hour (the Churchill is better than the JR, just) even by public transport as the JR can back up for miles so the buses can't get there, I haven't had/seen long ques to get to the Churchill just waiting to park. It will probably be a Tuesday and they are the worst. Good luck.

  • No idea which one yet. Thanks for the tip on parking. 

    It's just a case of waiting now. 

    thankyou. x

  • Having, what's left of, my tonsils removed on Wednesday. Then they will be tested. 

    But I've been thinking... I don't think I'm going to have radiotherapy. I wont be able to cope with that and look after my kids doing school runs and lunches, cooking, plus working myself.  

    fingers crossed they come back clear. 

  • Good evening pixie, thanks for the update lets hope your tonsils do come back all clear, that would be wonderful. I and I'm sure the rest of the group would like to wish you all the best for Wednesday, good luck.

                                                                                                           Chris x