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. 

  • Hi Hazel

    Nice of you to remember.  Yes it was tomorrow but has now been changed to Friday!  Just hope it doesnt get changed again as we have been waiting since Dec 3rd.    We are pretty nervous about it but keeping positive. I will keep you posted. X

  • No problem, I try and remember as when I had important dates I had a lady who contacted me every time  in the cancer U.K. forum .Weve actually met up in Portsmouth and keep in touch it’s the little things just knowing someone else is thinking about you l I do think the forums  do help throughout diagnosis treatment and recovery everything x for Friday youve all  come this far not much further now.

    sending hugs

    Hazel x

    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, yes it really does help a lot.  We are quite near Portsmouth, though treatment is at Southampton. My husband is doing the man thing ie ignorong it completely but worrying inside.  Shame he has to have this biopsy as his throat is improving all the time - he now had 2 Weetabix, bacon and egg and toast for breakfast!

    B

  • Hi small world , you never know. Hopefully we can all meet up later in year,next time we are down.Tell hubby well done on bacon I struggle still with bacon ,toast eggs fine but bacon step too far ! It’s so strange how we are all different.

    Hazel x

    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, madaboutmutts, Hope all goes well for Friday as you have been waiting a long time, its only natural to be nervous at this moment of time, keep up the positive vibes as they will help a lot, great help from Hazel as always. All the best and good luck.

                                                                Chris x

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

  • Thanks Chris

    Your interest is much appreciated.

    Going to he a long day as he is now on the afternoon list and its a 50 mile trip home.

    We just want to get it done and know exactly where we are. I will keep you posted.

    B

  • hope all goes well. 
    I had my post PET/CT biopsy after my throat had started to feel much better

    Not having anything to go by but the scan( nothing visible) they took eight stabs at me with the biopsy needle 

    Nevertheless, though I was sore for a few days after by a week it was all much better. 
    Good luck

    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 Beesuit  -  everything is crossed! 

  • Hope the biopsy went ahead today and that it went well.

    Thinking of you both.

    Linda

  • Hi All

    Long day today.  Biopsies done. They said nothing overly concerning to see.  One side of throat a bit redder than the other (radiated side) so biopsies taken there.    Appointment on 28th for results.  Was pretty worried when before op registrar said "we are going to do a panendoscopy, biopsy and possible tonsillectomy!   I had to point out they were removed in June. Also told he could take Ibuprofen for pain, and he takes blood thinners so not a good idea!  Felt it would have been a good idea to read the notes!  Anyway it's done, now for the wait.  Hes ok but sore and sleepy.  Thank you all for your good wishes.  Xx