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Worried I have lymphoma :(

Worrywart95
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Hi everyone,

I developed a full body itch about 8 months ago with no obvious cause or rash. After I saw this could be a symptom of lymphoma I felt my lymph nodes and noticed a few of them were swollen, especially one under the right of my jaw (about 1-2cm, painless, rubbery). I had no other signs of infection. 

I went to the doctors several times and was told that lymph nodes can sometimes swell in response to infection even if you don't noticeably have one. As for the itching, I saw a dermatologist who told me it was likely due to a combination of eczema and low ferritin. I always found this odd as I only developed a few eczema like rashes in response to the itching, rather than the other way round and I was also continuously itching areas of my body which had rash whatsoever (my forearms, legs, chest and neck). It always seemed worse at night. 

A few months later I was put on a course of steroids for another autoimmune disease I have which also seemed to help the itching so I stopped worrying. However, once I completed the course of steroids, the itching returned. A few days ago I decided to have a feel of my lymph nodes again and they felt exactly the same as earlier this year - a few slightly swollen with the same more noticeable swelling under the left of my jaw. Again, I have no signs of infection and they do not appear to have gone down in 6 months, which the GP assured me earlier this year they would. 

I have also suffered from mild night sweats where I don't drench the bed / my clothes but I often wake feeling very hot and clammy, especially on the back of my neck. 
 

I decided to contact my GP again and I explained my concerns about having lymphoma, and she agreed that my symptoms were suggestive of either Hodgkins / Non-Hodgkins so she has referred me on an urgent 2 week wait to the haematologists.  

I am only 25 and I already worry a lot about my health. I have convinced myself I must have lymphoma as I can't think of any other cause for the combination of these symptoms. 

I am really worried about what may happen next and have already started overthinking the possible prognosis / treatments / side effects / work and finances etc if I were to be diagnosed with a cancer as I have already been off work for a prolonged period due to Covid-19 risk. 

Has anyone else been in a similar position? What were your outcomes? 
 

Thanks in advance :) 

  • Offline

    Hi :)

    I'm in a similar situation I've had several lumps on the left side of my neck, one in particular the size of a grape, for 2 months now.
    I've been sweating in bed a bit but not massively, got itchy skin, spots that take forever to heal, and generally feel fatigued and run down all the time. I've had headaches almost everyday for a month now as well but not sure if it's related. My GP is only doing phone appointments at the moment so it doesn't help when all I can do is describe the lumps. Thankfully got an ultrasound scan booked for this Monday coming so I can put my mind to rest and stop worrying.

    You're more susceptible to infections with an autoimmune disease so you could be fighting them off quite regularly without even knowing and the lumps could just be your lymph nodes doing their job like your doctor said. It's hard to tell without them being scanned. 

    That being said, I'm also worried about it being lymphoma, especially after reading you're more likely to get it if you've ever had glandular fever, which I did in sixth form 8 years ago. People will tell you not to google your symptoms but I'd rather worry about it and find out there's no issue than let something serious go undetected. And you still need answers on what to do next whether it's lymphoma or not. 

    Just try not to assume the worst for now. Wait to hear back before worrying about money and your job. They can't be mad about you having time off for an illness especially if it's the worst case scenario. But if you're like me and your anxiety is through the roof rn because of the current pandemic situation then hopefully it's just overthinking and stressing over something less serious. I hope it turns out to be nothing, let us know how you get on! :) x

  • Offline in reply to shan46

    Hi Shan46  

    Thanks for your reply! I've seen a lot of posts now where people are concerned about ongoing englarged nodes so maybe it's just one of those things? That still doesn't stop me from obsessively checking my nodes every 5 minutes to see if they have got bigger or if more have appeared!  I always fear the worst in most situations and now I just can't get it off my mind or convince myself otherwise. I'm just overthinking every possible outcome!

    I also only had a telephone consultation with the GP so she didn't actually feel my lymph nodes on this occasion, just asked me some questions and used what I said to form the basis of the haematology referral. I suppose that is better really as the last GP I saw 6 months ago said they were enlarged but just 'shotty' and kind of fobbed me off. I too would at least rather get it tested for peace of mind - it's the grape sized one I have that concerns me most although I can feel a few nodes on both sides. It worries me more when you read google and it says you shouldn't be able to feel normal lymph nodes! 

    At least you are having the ultrasound soon, hopefully that will rule anything sinister out. Perhaps that is what they will do with me too. You'll have to let us know how you get on but fingers crossed all is ok :) x

  • Offline in reply to Worrywart95

    Just thought I would update anyone who is interested...

    I was seen by the haematologist and had various blood tests and an urgent, same day contrast CT scan on my neck, abdomen and pelvis. I got the results today and it was good news - no enlarged / suspicious lymph nodes seen anywhere in my body. Apparently all my lymph nodes are less than 1cm, even the ones in my neck. I am so relieved about this and I know it sounds silly, but I can't help feeling a little sceptical as I can definitely feel at least 2, 2cm hard lumps in my neck. Surely these would have shown up on the scan? 
    If there was something sinister, would the CT scan have definitely picked it up? In other words, is a CT scan alone enough to rule out lymphoma? Also, I forgot to ask if my blood results came back normal, but I presume the doctor would have said if not? 
    I have another follow up in 4 weeks with the haematologist....

  • Offline in reply to Worrywart95

    Hi worrywart,

    I'm glad you had your CT scan, and that it was good news.

    Contrast CT scans are pretty good at showing lymph nodes, and the radiologists know what to look for. If I was told that the scan showed all my lymph nodes less than 1cm, I'd be relieved and reassured.

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