Fear of misdiagnosis

FormerMember
FormerMember
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Hi all, 

I feel awful posting here without a diagnosis of FL. I hope everyone is staying strong, I just have gone through many of the forums looking for answers. I have had what I would say are “swollen lymph nodes” in my neck, collarbone and armpit all on the same side. 

I was just wondering if people were diagnosed from multiple lymph nodes? And what size they were ? 

background 

- 24 female

- lumps have been here since at least dec 218

- nursing a 22 month old (also has a lymph node in collarbone) 

- had an ultrasound in feb 2020, given all clear but didn’t specify my nodes as I just cried in fear 

- nodes are roughly 1.5 cm in length and 0.5cm diameter in armpit but this one is super uncomfortable esp when nursing my son! Collarbone (left supraclavcular) 3.5-5mm all over, submandibular (firm and doesn’t move so much also tender to touch) about 1.5-2cm and 1cm in short axis I also have a few other pea size ones in my left side of jaw/throat one level three that feels about 1cm chilling on my vein.. my breast (left one) is sore but no obvious lump and it was checked briefly in March by breast clinic (not sure if I had such bad pain at the time) 

- all nodes are “achy”

I have been put in a routine referral for armpit and neck ultrasound but this could be absolutely ages due to the backlog from Covid, I feel a responsibility to diagnose/find out for myself due to misdiagnosis when I was 16 which led me in intensive car in an induced coma and eventually partially deaf so I do worry for me and my son!! 

  • Hi , sorry to hear the journey you are having. I also see that you posted your concerns to our nurse team a few months back and you received some great advice.

    Over the years I have talked with many people on this community who had the same concerns as yourself, some unfortunately did eventually did get diagnosed with a blood cancer but many did not.

    By now I think you know that the main way for a clear blood cancer diagnosis to be made would be through a CT/PET Scan and biopsy so you do need to keep pushing the system.

    I was diagnosed way back in 1999 with skin NHL and the only sign was a rash..... it took 14 years until a bully lymph node reacted but once it did it just grew and grew and that was when full on treatment needed to be started,

    I do have a few 1cm lumps in my neck and yes they are sore if I feel them but zi know they are not a problem but my main problem is my wife keeps throwing a slipper at me when I fidget with the lumps as this inflamed them.

    Keep pushing your pointy elbows into the doors of the system so you can be seen quicker and get some answers.

    Waiting for results from Lymphoma tests - managing your feelings lymphoma-action.org.uk/.../waiting-test-results

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    Thank you for your great words!! I don’t remember posting a previous post and if I’m completely honest I’ve just tried to find it but have no idea how to navigate this forum! 

    I have seen a few of your posts and so glad that you overcame your odds and doing so well! 

    It’s so frustrating It’s like you literally are in the hands of whoever is willing to completely check the symptoms. I’ve had an ultrasound and an mri but without contrast and I know both of these tests can miss lymphoma, bloods are always normal too and have no typical “b symptoms” because of my age I’m usually told I’m thin and that’s why but I’m average in weight and I popped to an a&e doctor for other reasons recently who I mentioned my nodes to who asked why I hadn’t had a biopsy after feeling it and said it’s off they are all on the same side. He organised for me to have an abdomen ultrasound and look at lymph nodes at same time but the sonographer refused and told me she would get my gp to ask to do specific neck and armpit US on my report but then didn’t. So now back at the beginning waiting for a routine apt for scan! 

    it’s the worry of Covid at the same time, my partner doesn’t understand my worries and he works for the emergency services in London so I am awfully worried about having an underlying condition and getting Covid and becoming desperately ill again! Hopefully I can get some answer soon - best of luck on your journey thank you 

  • Hi again, I asked the team to have another look for the reply from the nurse team as I can't get into it again Smirk

    As you are getting to understand the route to a blood cancer diagnosis is not a straight forward one and the symptoms may never show.

    You honestly just need to keep pushing the system as best as you can but it is important to remember that Stress and Worry does have a significant effect on the Lymphatic System so lumps and bumps will go up and down.

    Always around to listen and help as best as I can.

    EDIT: This is the LINK to the answer you got from the Nurse Team 6 months back.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge