Biopsy to confirm if transformed

FormerMember
FormerMember
  • 11 replies
  • 10 subscribers
  • 2847 views

I was diagnosed a year ago, and have been on watch and wait, it seems I didn’t have to wait long as my consultant thinks my FL had transformed, having biopsy next week to confirm or not, will have follow up the day after with consultant to discuss treatment.

Was shocked to be at this point so soon, although not confirmed, feels scary all the same. Will have some treatment either way as progressing, just don’t know what yet until results.

The not knowing is harder to deal with, can cope when there is a plan in place!

  • Hi again, there have been a number of folks on the group who have had transformed FL into an aggressive type like DLBCL and normally requires some strong treatment but tends to respond well to treatment.

    Nothing you am do you nail the results are all in.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    Thank you, I have been mentally preparing myself for the worst case scenario, going over and over telling my family, being strong and positive whist around them will hopefully be good for me.

    I have questions and thoughts though that I keep to myself, can’t say out loud until results are in.

    hope you are well

  • It’s a hard time not having the answers to the ‘What now and what next?’

    i am doing well thank you.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Maggie, it sounds like that plan will be in place soon and the questions you need to ask are the standard ones, the is a leaflet on this site and others giving you the types of questions to ask so you understand if that's what helps rather than just being told this is what we plan to do. As some people are happy to go with whatever is said and others need to know and understand, I was in the later group, what's important is what's right for you.

    The standard treatment which has been used for many years now is rchop as its still seen as the big guns for FNHL even though the are newer variations out there. 

    If it helps ask some questions or share your thoughts, the only caution is this is an open public site so family could read them to if that is a concern at present. You can also call the helpline and talk things through if that's a more suitable route at this stage.

    take care

    john

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • FormerMember
    FormerMember in reply to johnr

    My concern is that I have been in a bubble of normality and this may about to be burst. I could cope with watch and wait, felt I was lucky. I am single and independent, still want to shield my adult children from what may lie ahead.

    I will look for the leaflet 

    thank you and happy new year 

  • Stay strong and believe God bless us all on these  websites take care stay safe  x all  the best  for the future carl aka clecker 

  • FormerMember
    FormerMember in reply to Clecker

    Thank you, I know we are all in a similar boat here, feel guilty for being on here on New Year’s Eve, feels such a lonely time though. 
    thanK you for replying, good to know people are there.

    take care stay safe and all the best for 2021.Alli aka Maggie-18

  • There  are some  amazing people on here who help  me so much  and  hopefully  they  can  help  you we all understand  its a lonely journey we all  take  with  different results  fingers crossed yourThumbsupwill be good Thumbsup

  • Never feel guilty about coming on to the Community as this is why we stick around, but first happy new year Alli on the 1st day of 2021 and let’s look for a better year in so many ways for all of us.

    This is a link to a Lymphoma Action info sheet about questions you should be asking your team.

    https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-08/LYMweb0014QsMedTeam2020v4_PDF_information_sheet.docx.pdf

    You may also want to check out the Lymphoma Action Buddy Service.

    lymphoma-action.org.uk/.../buddy-service

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge