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Feeling a little lost- lymphoma symptoms

Mollie_93
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Hi everyone I hope everyone is ok. I don’t know if I should be here as I’ve not been diagnosed with anything as of yet I’m just going through the motions of everything at the moment. 

Basically I started developing symptoms September last year where my chest was tight I was dealing with wheezing, really itchy skin and a persistent cough that was worse of a morning. I kept putting it off but then earlier this earlier things started to progress abit more. The itchy skin continued and it feels like once a month the itchiness is located somewhere new. It started on my legs, then moved to my feet, then arms and lastly hands. (At the minute we are back on hands itching). I also started noticing pain when drinking alcohol, feeling extremely exhausted after the most average of tasks and lastly a painless lump that moves in my left collarbone. This made me go to the doctors and they sent me for blood tests that came back with my inflammatory markers high and white blood cells within normal range but on the high side. So along with that and my lump they referred me to haematology for what I thought was going to be a ultrasound and a biopsy. However she sent me for a CT scan. The CT scan came back quite quickly and during this time I developed a second lump in my armpit. The haematologist called me to say they saw the lumps I had pointed out and nothing else flagged up other than a fatty liver so she was discharging me back to my GPS care.

Now a month later I’m still feeling the exact same and my lumps are still here, I would say they have become more pronounced. I went back to my GP today who examined my lumps again and said my neck one especially felt suspicious but because it’s only been a month since I got discharged he wants me to wait it out to see if they change again or if I get more lumps.

I’ve read the only way to really diagnose lymphoma is to have a biopsy, do I push for this? Could it be that I have got a slow growing lymphoma growing? Has anyone else had something similar happen to them?

I’d love to hear some feedback as I’m just going out of my mind with all of this waiting. 

thank you for reading and I hope you are all ok

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    Hey mollie, I was diagnosed with non Hodgkin lymphoma in 2007 , my symptoms were large lump in my neck loss of weight on and off sweating other than that I felt well , I really didn’t have any concerns just thought it was swollen glands it was only when my daughter said mum that lump is getting bigger and we we’re going on holiday the next day so went to the doctors to get antibiotics, just went to a walk in centre and they told me I needed to go to the hospital ASAP, one doctor said I could go on my holiday and another said he would prefer I didn’t, so me being me I went on my holiday for two weeks by this time the lump had got bigger still didn’t even think cancer as felt so well , the day I arrived home there was an appointment for a were they tried to take cells from the lump in my neck which I didn’t feel at all the next day when I got there they couldn’t believe how much bigger it had got , by this time I couldn’t lay flat as I couldn’t breathe if I did I had pillows so I was sleeping a little upright, I got a letter back really quickly saying they couldn’t get a result from that procedure so then had to go for a biopsy I then got a phone call within days with my diagnosis, because I’d left it so long before I was checked out I then had to have chemo with rchop it was so strong and not very nice at all , I think you need to push for a biopsy asap I hope this helps a little bit , if you have any questions please feel free to message me, Shirley.

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    Hi Mollie

    Haematology are the experts In the Lymphoma field, and they wouldn’t have been so quick to discharge you had they had any inkling that there was a problem.

    I was diagnosed with NHL in December 2021 and yes, the only way to officially diagnose a lymphoma (there are over 65 types) is with a biopsy, you are correct - however there are many different indicators and factors that would lead the haematology team to suspect that, and it sounds like they don’t?

    I wish you all the best however I think it best if you listen to the experts on this one 

    Sean

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    Hi Mollie, my daughter was diagnosed with non Hodgkin lymphoma June 2022 she didn't exhibit any symptoms no itching ,weight loss or loss of appetite she found notice a lump on her right collar bone in January went to her they told her it was jus a swollen lymph node it started getting bigger in February she had some blood tests and a scan they both came back clear they said it nothing more than a large lymph nodes maybe she had a previous infection the only issue she had was difficulty breathing when laying down. It started getting bigger so in March they referred her to the ENT clinic she was told she and an appointment for September 2023 because she was 18 i got her permission to call the clinic on her behalf no way was going to wait over an year for a  appointment. Finally got a within days thankfully after the Biopsy 4 days later she was diagnosed with non Hodgkin lymphoma stage 2. So please demand they do a biopsy and try to stay positive.. I'm currently awaiting my biopsy result for Acral melanoma wishing you the best of luck xx

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    Hi Mollie,

    Haematologists are experts in lymphoma and I think you can feel confident in their reassurance, especially with a CT scan. Only a biopsy is definitive but a scan will give indicators, e.g. I had an MRI and I was called back for an ultrasound and biopsy. Lymph nodes can pop up for all sorts of reasons and the chances of cancer are low (easier said than believed I know!) I don't think waiting to see if anything else grows is a bad thing, but if you really want to push it you can definitely try for an ultrasound, it's not guaranteed that they'll give you a biopsy though. Lymphoma is slow growing in any case so a few more weeks-months is not likely to make any difference. Hope this gives you some reassurance!

  • Offline in reply to loobiloo98

    I’m afraid I’m going to have to slightly fact-check here. 
    Lymphoma is not, in many cases slow growing. Lymphoma can appear in 2 categories - HighGrade or Low Grade depending on the type.

    Low-Grade Lymphoma does indeed grow slowly over many months/years, and is often treated very gradually over a long period of time...

    However....

    High Grade Lymphoma is aggressive, and can grow extremely quickly over the course of a matter of Days/Weeks. I was diagnosed with High Grade Burkitt Lymphoma in December 2021 and became very unwell in a matter of weeks.

  • Offline in reply to AnxiousAsAMouse

    Sorry I could have been clearer, I meant to say low grade and that if your symptoms haven’t progressed during the waiting period then you’re not likely to have an aggressive form that needs immediate treatment. 

  • Offline in reply to AnxiousAsAMouse

    Thank you for your reply. Yeah you are right. I think I’m just going to try and park it for now and just keep a watchful eye on the lumps incase of any changes. Thank you again and I hope you are ok 

  • Offline in reply to loobiloo98

    Thank you for your reply. I hope you are ok! 
    Yeah you are right I think it’s just because when I went to my doctor this week he said how the lump in my neck does feel suspicious so it put it back in my head again worrying about it. I think I’m just going to wait it out and keep an eye on the lumps to see if anything changes. Thank you again x

  • Offline in reply to Angelinaaa

    Hi. Thank you for your reply. Oh my goodness I hope your daughter is doing ok! How is she? That must’ve been horrendous. This is my worry with my lumps but as people have said on here to my post haematology are the experts so maybe I’m best waiting and just keeping an eye on my lumps for now? 
    Also I hope you are ok! When did you have your biopsy? Praying for good news for you x

  • Offline in reply to Shirley2212

    Hi thank you for your reply. Oh my goodness! I’m so sorry to hear this! I hope you are doing ok! How are you feeling these days? 
    Thank you for your advice! I think I’m going to wait a little bit, I’ve got to have some blood tests done next Thursday anyway so I’ll keep an eye on the lumps and see if anything changes as well as symptom wise. Atleast then if anything does happen to change I can go straight back to the doctors. Thank you again x

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