Was told it’s lymphoma, now they’re not so sure.

Hope this is the right forum!

Had a cough since May, had numerous antibiotics to no avail. Eventually the GP sent me for a chest X-ray. After that things very quickly escalated. GP referred me to haematology but heavily implied it was lymphoma, saw the lymphoma specialist who confirmed it was lymphoma. I was surprised they diagnosed this purely from a chest X-ray but they were very convinced. I've had no other symptoms except the cough and tireness.

i had bloods taken at the appointment and a few (horrible) days later the consultant rang to say my serum ace indicator was very high and now it looked like it could be sarcoidosis. He said they were 50/50 about whether it was lymphoma or sarcoidosis. A week later I was sent for a CT scan where I've now been told it looks 'promising'.

i now have a biopsy of the lymph node above my collarbone- supraclavicular fossa biopsy. Where hopefully they will be able to determine whether it's lymphoma or sarcoidosis.

not looking forward to the biopsy to be honest, has anyone had one? Also everything seems to be so vague and moving so slowly. Especially since they were so convinced it was lymphoma initially. I feel like it's been 3 weeks of rollercoaster emotions and not really knowing what they're thinking. Everything sounds more positive but obviously it still could be lymphoma.

also not too sure about the sarcoidosis side of things as haven't spoken to the respiratory consultant he's just been liaising with my haematology consultant.

I just feel so up in the air! 

  • Hi Northernblues,

    Welcome to Cancer Chat. I can imagine this situation must be unsettling and confusing. It sounds like they're working hard to find out what's going on. I know the waiting and the uncertainty is never easy though - but it's good to hear they are sounding more positive.

    I hope it's not too long to wait for your next appointment and that you get the answers you need soon.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator