False positive biopsy???

I don't really know where to begin. 

In December my 10 year old son had a sinus infection , nasal speech, Covid . He was noisy breathing and sounded chesty so I took him to the doctors , they said it was bronchitis and large adenoids/ tonsils  , gave antibiotics which didn't help , then he was prescribed inhalers again they didn't work , 2 weeks ago he started struggling to breathe at night , really snoring , had a stridor and breathing pauses . I took him to A&E and they said it was sleep apnea from large adenoids. Gave us a nasal spray and told us to wait for our ent appointment in June . I wasn't happy with this so I booked a private ent appointment. I asked for an X-ray as something was really affecting him . Then we see a mass in his throat . I went straight to Evelina hospital in London and last Friday they removed as much of the tumour from his throat as possible.  After surgery the consultant said she was 99% sure it was cancer , likely to be lymphoma as this is what initial histopathology suggested. Said we would be transferring to Royal Marsden for treatment this week . He had MRI with contrast yesterday morning, CT scan today . This afternoon, the consultant came round and said we can go home .... and that his MRI was clear , no evidence of any residual mass , unremarkable appearance of surrounding glands , unremarkable appearance of the brain and no cervical lymphadenopathy. They have said they still don't know what it is as biopsy hasn't come back , could be a genetic issue or ' a freak one off ' told to wait for a call with CT results and up to 2 weeks for a call from the cancer centre ???!!! 
 

I don't know what to think ? They jusy kept saying it's baffled them and that it's a very rare occurrence. 
 

meanwhile my son is completely back to health, all obs fine , bloods fine , eating and drinking better than he has in months . His voice is completely normal! 
 

neber been so confused 

 

can the initial biopsy be a false positive??? 

  • Hello Beckie and thanks for posting us a question, 

    I am sorry to learn about what has been happening and can understand you being baffled, but I am so pleased that your son is back to his normal self. 

    This all sounds very unusual and rare as the specialist has already explained. I believe that lymphomas can be difficult for the histopathologist to diagnose and when lymphoma is diagnosed I don't think it is unusual for tissue samples to be reviewed by another expert - I was wondering if this is what is planned. I expect a false positive biopsy is a possibility- these things are very complex. 

    Being told your child has cancer is very stressful - you must have had a horrible few days and even now I don't suppose you can feel completely reassured until the CT results are back and you have talked things over again with the doctors. Hopefully they will be able to tell you a bit more when you see them again and make more sense of everything. 

    For now, don't be tempted to go online looking for answers, I doubt you will find any as this is such a rare situation, and searching often makes people edgy and preoccupied. Try and shelve the bafflement in your mind until you have the chance to speak to the doctors, hopefully they will be able to tell you more then and all will be well.    

    Wishing you the best, 

    Julia

  • Thankyou , his discharge letter said the tumour is not lymphoma now . It's so confusing !