Waiting again!

Some of you may remember my post that my husbands PET at 12 weeks post tonsil/lymph node radiotherapy, had shown clear lymph nodes but some uptake where his tonsils were, which may or may not be residual cancer.  The surgeon said 4 weeks ago that he needed a biopsy to see if it was inflammation or cancer. We have now been told the earliest for this will be end January and as the biopsy result takes 2 weeks we are looking at no result till mid Feb - 10 weeks after the consultant said he needed it.

We are really really anxious about this, the waiting to see if he still has cancer is unbearable and we are worried that if it is cancer, it will be developing all the time.   I have tried speaking to admissions, consultant sec, emailing clinical director and PALS to no effect. We have even enquired about having the biopsy privately but there is still a wait of several weeks.

We are at our wits end about the prospect of more weeks of worry, and not knowing if he will need further treatment.  This is a large teaching hospital and we know they are under pressure, but surely with cancer they should move a bit quicker. 

  • Tell me about it , some whizz kid came into trust last January and altered the booking system nothing can be booked further than 6 weeks in advance then you get to that stage and can’t get in ! Last appointment consultant said he regularly had 10 emails a day to deal with from patients who can’t get appointments. What makes it worse is the booking clerk saying what part don’t you understand whether you have had  had cancer or want your ear syringing  I don’t have any appointments grrrrr 

    rant over H 

    ive got my oncologist yearly re Jew Monday at main cancer unit that appointment came through bang on time so just shows. Anyway will ask him what I can do 

    hx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com

    i give a honest account of my experiences with tonsil cancer 

    T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can .Onwards and upwards to infinity and beyond.

  • Hi hope you got somewhere today with appointments to see some one .

    on my news imrung appointment s again got a totally different response a lovely lady who within 2 mins has got me the original, appointment that the bookings team has cancelled back ! Then was at Bthe main cancer centre met my oncologist for yearly reviews ,blessing  him he spent an hour of his lunch break talking to me and hubby and exchanging views.It just shows what a difference  good consultant can make , I even have his email address which he says I mustn’t hesitate to use it if I have any worries. 

    Really hope you’ve got somewhere today 

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com

    i give a honest account of my experiences with tonsil cancer 

    T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can .Onwards and upwards to infinity and beyond.

  • Hi Hazel

    After much badgering have been given a date for biopsy 16th Jan.  We are so hoping this will show post radiotherapy inflammation only!   A bit worried as husband has  a cough - not sure if this is only due to dry mouth. Did you have this after your radiotherapy?   Glad you have got sorted - yes it really does make a difference if you have a good Consultant.  Both our oncologist and ENT Consultant have left and the new ones aren't nearly as approachable.  Still at least we now have a date and should have a result by end of Jan - 2 months after the PET scan showed activity in throat.  As his lymph nodes were clear and scope looked ok we are hopeful of a good result.  

  • Hi 

    Thats one step forward at least , yes once Radiohead finished I developed a cough in fact when I stopped taking the co codomol the cough developed. But yes dry mouth does in some cases make you cough today in waiting room there were 3 of us sipping water inwas 18 month post radiotherapy they were 3 month and 6 month  and coughing so wouldn’t worry too much easy to say harder to do I understand that entirely. .

    clear nodes and clear scopes are excellent indicators , there as been a few people on the various forums whose pet ct scans were still showing radiation uptake , one girl like I said who has been in touch  with me got  the all clear last Friday after a longish wait mid November  , and a lady who has posted in Macmillan before she had a biopsy early December after pet ct scan showed uptake  totally ruined her Christmas but on Friday got the all,clear. In my own case I wasn’t scanned until 18 weeks post radiotherapy. So hang on in there sometimes the consultants forget that it’s not routine for us the patients or family’s. sensing positive thoughts Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com

    i give a honest account of my experiences with tonsil cancer 

    T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can .Onwards and upwards to infinity and beyond.

  • Thank you Hazel

    Really appreciate your help x

  • 16 week avid PET/CT here with me too as you know. Scope clear. Biopsy clear too. Surgeon doing biopsy couldn’t see where to go and called a colleague in for a second opinion while I was out on the operating table. I think it’s quite common so oncologists see it quite often and don’t realise how stressed we get. I was told not to worry as they were 99% sure there was no cancer there. 
    Coughing? Yes nearly a year from Radio my dry throat makes me cough. It starts as a tickle that I can’t swallow away. I have to have a drink. I’m sure time will improve things for Hazel, me, your hubby. 
    Fingers crossed all will be well

    Dani
    Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
    The blog is my personal cancer journey, warts and all. 
  • Thanks so much.  I cant tell you how helpful your posts on this have been!

  • This is better news for you, still a long time for you both to wait from the initial word from the consultant. Having a change of consultants does no help matters, thankfully i had one of the best (in my opinion Slight smile) Fingers crossed for you and your husband with the biopsy and the results, take care, best wishes.

                                   Chris x

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

  • Hi Chris and thank you.  Really cant wait to get this done and find out where we are.  Someone we met during treatment for same had his scan and result on the same day as my husband - and his result was exactly the same, so he is also having biopsy.  You have all been so supportive - it really does make a difference.  I will keep you posted.  Xx

  • Hi think it’s tomorrow you go to hospital or manybe I’ve dreamt it ! Either way fingers and toes crossed for positive news for both of you .

    Keep us posted Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com

    i give a honest account of my experiences with tonsil cancer 

    T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can .Onwards and upwards to infinity and beyond.