Suspected Lymphoma

Hi, I found what felt like a lump above my left collarbone about 4 weeks ago, I went to see the Doctor and he sent me for a urgent ENT appointment within 2 weeks. 
 

When I had my appointment the consultant said she thought it was a piece of soft tissue or muscle but would refer me for a urgent scan to make sure. 
 

I had my ultrasound scan this week and they have found enlarged lymph nodes in my Supraclavicular area on both sides of my neck, the right side being larger (I can't feel these and neither could the consultant upon checking me.

 

I was told it was possible Lymphoma by the scan results and I'll be going for a CT scan of my head, neck, chest and abdomen on Monday and also a core biopsy in the next week or so too.

 

I know they have to tell me worse case scenario but has anyone had any benign results from this.

 

I am 33, 2 children under 4, very healthy, don't smoke or drink alocohol, no symptoms of lymphoma.

 

any help would be great, thanks xx

 

  • Ah Lou I think when they are doing all the tests they wait until everything is back and then they will give the results; rather than half a picture. 
    A pet scan just shows the body at a more cellular level and shows active tissues and lymph nodes etc. 
    I won't get my biopsy results back until NYE (that was a us guided biopsy too, don't worry about that it's absolutely fine)

    they have to be 100% sure what it is before they tell you and they will have a plan in place for whatever it is.

    I have been referred from ENT to heamatology already as it's Christmas (even without the diagnosis) and the consultant said to me, don't worry until we have the biopsy results there is so many outcomes. I took that as a bit of a positive. She said they do theses tests to rule out lymphoma not to diagnose if that makes sense. 

    ive prepared myself for a diagnoses of lymphoma but my mind is telling me it's something else as I literally have no symptoms.

    the waiting doesn't help; it's such a long process. I feel exactly the same, every day I was getting letters, calls, appointments etc and it overloaded my head.

    my anexiety is through the roof. 
    sarcoidosis is something that can mimic lymphoma too, I've read up about it and my blood tests and a few other things match with it.

    try and relax and get Monday out the way, my cousin has stage 4 lymphoma in his bone marrow also and he's had 6 months of chemo and could be in remission soon. xx
     

  • Oh thank you so much for all of this !! your consultant sounds reassuring. I've seen two and both said its "highly likely" and would be surprised if anything else, which is jjust awful to have said.   I think my  other symptoms are hight sweats which can be quite bad. My lump is just one as far as I know on right supraclavicular.  Its 1.3 x2cm so it's big

    I actually feel  let down by my gp. She did bloods last may but she didn't include  any markers that I've read about for cancer and j only found the lump in around August , so they haven't been done since . That plus my 11 week wait has my wrecked. I've been trying to get bloods done privately , hopefully monday. 

    Sorry for the essay and the whine .

  • Good to hear for your cousin!!

  • Don't be silly! The way you are feeling is totally normal.

    I feel the same about my GP, I've had elevated liver enzymes and high platelets for years and they just say 'oh that's normal for you' which I don't think is the case.

    I was told it was highly likely also my right supraclavicular node is 2cm x 2.7 I think something like that and I have a lump on my right side in the cervical area and also chest ones enlarged. 
    have you had any scans other than ultrasound xx

  • Hi jenc1986, 

    Thanks so much for your reply with the info.  I've had a chest xray, which came back clear but I'm not sure as my lungs are hurting, I have like throbbing pain in them now and slight pain when I breathe in and out so I don't feel 100 percent about that xray and what it showed? 

    I e read up on sarcoidosis too and TB and latent TB and every single thing on internet, I'm just so anxious it's all I can do! 

    Do you kind my asking what in your bloods do you think matches with sarcoidosis? 

    I'm trying to get bloods privately but I've found the lack of action here really upsetting. So I'm wondering what to ask for. I'm going through public system here for the ultrasound biopsy so I wont see the consultant I'm under but I want to ask him to refer me for an mri and full bloods instead of going to my gp and paying here again when she should have done it all already.

    It's great you have no other symptoms,  maybe you will have infection and are clearing it  xx 

    For me  I found the lump in august but my lungs and arm and shoulder pain have just been creeping up since then. 

  • Hi guys, sorry to jump in mid conversation but I can't help but relate to both your worrying and anxiety over waiting for results. 
     

    I had a lump removed from my arm 10 weeks ago and 3 weeks later a doctor rang me to say it needed further investigation as it had cells similar to lymphoma. I was in utter shock I thought it was an infected sweat gland or something! 
     

    Anyhow 7 weeks later I've just had an appointment with a lymphoma specialist and he basically said they need more time for the biopsy results to come back. I'm so worried as I've also found lumps in my down below area. 
     

    Can't help but worry I also have 2 young children  

     

  • Hi emmy28, 

    I'm so sorry you're going through this too . The wait is absolutely horrific isn't it. I think I'll need some counselling for the shock of it all regardless of the outcome.  I'm a mum too and it's tough trying to out if out of your mind.  I hope you are doing ok and you get results back soon xx

  • Hi jenc 

    I'm so sorry to hear you're going through this and I hope you're doing ok and have some support with you always here if you need to vent  xx

  • Oh no I'm so sorry to be reading this. You certainly have the right attitude for this you can beat this. Stay positive. 

    Keep us updated. Sending lots of love your way xx

  • Hi Jenc1986, I hope your doing ok? Have you had any results back?

    I hope you don't mind me jumping on and messaging you? I've been referred to ENT for a lump i have just under my ear (i noticed it about 6 months ago) well one day it made my face swell every time i ate. Went to see my GP who referred me on. They think its just a blocked Salivary gland. They have asked me to go straight for an ultrasound then will see me in clinic after with the results. My ultrasound is on 15th Jan.

    Well today i have found 2 more lumps lower down my neck just above my collor bone, I think in the same place as you. Im now starting to panic and feel sick to my stomach with worry. I have 2 young girls. Im probably just reading too much into it this early on but you can't help worry can you? Do you think i should let my GP know, and maybe get fast tracked, or am i being to hasty? I hate going to the GP at the best of times! I'm not normally a worrier.

    I hope you managed to have a good christmas. x