Hi all, 

Its been a while since I've posted on here. I'm 10 weeks this Friday post chemoradiation for tonsil cancer - 1x lymph node at the back of my neck hence treatment. 

I had such an awful time in terms of nausea and vomiting which has been put down to the cisplatin. On the upside I've lost 3.5 stone in the process....every cloud and all!!! 

I have my 2nd monthly review next week and was just wondering when other people had a repeat PET scan to make sure treatment had worked? 

This may be a silly question but during radiotherapy when they take images/repeat ct scans, when the therapists say "the images all look good" does this mean in terms of it's working I.e the lymph node is getting smaller or just in terms of the radiation is going to the right place? 

I have been so positive re.the outcome but am really struggling to stay positive at the minute. I feel like my life is on hold pending another scan. 

Thank you xxxx

  • I am just about to start 2 x cisplatin and 6 weeks radiotherapy for back of tongue and neck lymph nodes. I hope you do not mind me replying.

    Regarding  the images all look good" does this mean in terms of it's working I.e the lymph node is getting smaller or just in terms of the radiation is going to the right place. I would ask the question to your oncology team.  

    I hope you continue to be well. As i say I am just starting this journey, but I will ask questions and , I was going to say not worry, but of course I am worried. I will always question every stage I am about to begin. My Peg gets fitted Monday 14th. 

  • Hi KMJ19 ,  well done for getting to this stage as it's not easy in some cases, i never had a repeat scan of any sort after my treatments or surgeries. They will compare the old scans with the new scans so they can see what has been happening. The main point they will focus on is the tumour to see if it's behaving itself and if the surrounding area is ok. Please try and stay positive as i found it helped me cope better. Good luck with the scan results, take care.

                                                                              Chris x 

  • Hi Chris, 

    Thank you for replying. 

    It's just the waiting I'm struggling with but this is going to be the next five years so I need to get used to it! 

    Best Wishes 


  • Good morning Geolind, 

    Thank you for replying.  

    Good luck with your treatment and with your peg fitting - I'm waiting for a date to get mine removed!! 

    Best Wishes 

    Kelly x

  • Hi geolind,

    Good luck going forward, just read your post and my diagnosis and treatment plan was identical to yours. 

    Just finished treatment on the 11/9 and just a month post treatment now. 

    Been told my pet scan will be straight after Christmas which to be honest suits me fine as I just want to get back to normal regards eating etc,any questions as you go through your journey feel free to ask,everyone on hear has been great regards tips or answering any queries you have 

    All the very best


  • Hi,

    thank you for posting your experience on this forum.  My husband has just had the same diagnosis and is starting the same treatment in a couple of weeks so its so encouraging to here that you have got through it well done!  I do hope your scan is ok I am sure a positive mind helps.  Good luck xxx

  • Hi Maggie  

    It was a tough 6 weeks but hopefully worth it. 

    The very best of luck to your husband. He must be kind to himself and accept all offers of help. 

    Best Wishes xx

  • Hi Martin, 

    Thank you for taking the time to post. 

    Hope your recovery is going well. 

    Best Wishes 

    Kelly x

  • Hi Kelly glad you’ve come back on line have been thinking about you. As far a small I know the radiographers are looking at where the beams are being directed nit actually at the cancer just making sure they are lining everything up right. Hang in in there yiuve come this far don’t stress about pet ct scan take everything a day at a time

    Hazwl x

  • Hi Hazel, 

    Your posts always make me feel better Grin

    I've had my peg removed today so am feeling great. 

    I'm taking your advice and not worrying about a scan - I'm slowly feeling more "normal" and dont want anything to hinder that which stressing out and worrying will. 

    Hazel, I hope you are still enjoying your amazing recovery and as active as you have been. 

    Best Wishes 

    Kelly xxxxx

  • Hi Kelly. Glad I make you feel better bless yiu , yep stressing out won’t help recovery just go with the flow and take each day as it comes. Yes we are in Spain again oops , been biking today a a decent 42  km ride which is proobabky 41 km further than I could do this time last year , plus out every day on bikes so progress. 

    Ok still,sometimes have bad food days and get angry I can’t eat what I want to eat ,persevered with a steak the other night ,total,waste of money has need .edu water every mouthful which spoiled it ! But can eat lamb no problem. Roast veg are my favourite things to eat but can’t live onnthem alone and beans and pulses won’t go down somvant go veggie even if I wanted to have tried tofu umm nope that got stuck .

    keep on recovering and please keep in touch 

    Hazel xxx