Awaiting PET results

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My husband had PET - will be a week ago tomorrow. Spoke to Specialist nurse today who said results not back and we probably wont get them until he goes in for biopsies ? Tonsillectomy next Wednesday by which time it will be 2 weeks of waiting. Since the PET was to try and locate the primary source of neck lymph node swelling I am panicking big time that they may have found it somewhere  other than tonsils/tongue which is where they suspect it is.  Nurse said we will see Surgeon on day of biopsies and he will have results by then. The plan is still apparently panendoscopy/biopsies ? Tonsillectomy but I'm terrified they have results and they are bad and just don't want to tell him over the phone.  What is the usual wait for PET results and do they usually wait to discuss in person ?  We don't have an appointment with team until a week after biopsies. The MDT team meet on Tuesdays and apparently the results were not available for discussion yesterday so that wont discuss until next Tuesday - the day before his planned biopsies. Going mad with the wait!   Sorry rambling post but we really really would like to know where we are. Nurse also said radio/chemo takes about 4 weeks to plan ?

  • In my experience nothing was ever done over the phone in the diagnosis stage, all was face to face and I agree with that approach. Once diagnosis was confirmed I had numbers I could ring 24/7.

    Treatment will take time to plan for sure but I've said many times on here getting the right plan is more important than getting a quick one, as ever wishing you both all the best.

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    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Hi try  and remain calm inwas 63 days from diagnosis to treatment starting which is the parameters that nhs apply in tonsil cancer or tongue cancer all my fellow co suffers were the same time span 

    there isn’t a tried and trusted route masks need to be made radiotherapy needs to be accurately calculated to within a infinite degrees of accuracy. It’s easy for me to say try and keep calm but it’s true the old adage been there and done it really do apply to me as thusbtume last year I was in the same place ,dirstvrefferal 13 May first radiotherapy session 16 July.

    just keep off dr Google’s please you will only scare yourself more than you are already. 

    Keep in touch and deep breatheif I can do it anyine can.

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • FormerMember
    FormerMember

    It’s a very worrying time and I can empathise with your worries, we are in a similar situation with my husband in that we don’t know the results of any tests yet and Biopsies are on Friday, I’ve  been told by the secretary that we won’t get an appointment re results till after the biopsy results are back and I know these usually can take around a week to come back,  then they apparently have to try and fit us into a clinic as the planned appointments are too booked up so far in advance so it’s not worth them booking us an ordinary one.  

    I must admit I’m worried about the length of wait for treatment that people have mentioned, 4 weeks seems like a long time to wait fir start of treatment and the lump on his neck is getting alarmingly bigger as the weeks go by. Right now I’m really worried about the pan endoscopy on Friday . 

    Sorry cant offer much help just empathy with the waiting It’s really awful not knowing but I guess there just isn’t any choice and that’s really hard too.

  • Good evening his team seem to be running about right time wise as scans normally take two weeks before you know the results, my initial period took about 8 weeks this included scans,xrays, biopsies, blood tests, then I had my operation /surgery then my radio and chemo once the mask was made and my surgery had healed up . Please don't worry as it all seems to be going according to plan and his team know what they are doing as they have done it many times before. Wishing you all the best, take care.

                                                                                                     Chris x

                                                                                

    Its sometimes not easy but its worth it ! 

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