I’m a 22 year old male, who was referred to ENT for a swollen lymph node in my neck. Grade 2: 1.5cm x 1cm, mobile and non tender. I had an ultrasound carried out around 3 years ago and it was deemed to be fine and no further action, put it down to EBV (Epstein-Barr Virus).
Well, the swelling still hasn’t gone down, and I’ve gotten gradually worse over the past few months. I started university in September of 2021, and started getting very aggressive night sweats, i mean i would wake up and my bedding down to the mattress would be soaked. this happened for about 4 weeks straight. I started getting random fevers on a night that i couldn’t explain as well. I get very short of breath from doing easy tasks and i dont feel like a normal 22 year old. I’ve started getting really prone to infections, over the past 5 weeks ive had around 4, all in which have had to be treated with antibiotics or steroid cream. I stand up and go dizzy, however blood tests ruled out anaemia. I had a blood film completed which did show “occasional reactive lymphocytes” which cant be explained either.
I really do think there’s something wrong with me, but the ENT wont do a biopsy since the Lymph nodes look benign. Is there a chance this could be lymphoma or something else? Bare in mind these nodes have been swollen for almost 3 years and literally no professional has given me a reason as to why, they always say its after an infection.
Really appreciate anyone sharing any similar concerns or stories, not to look for a diagnosis at all but just some advice on whether to push for more tests like a CT or Biopsy or just leave it since the node looks benign on the scan.
Wow @Grant I am so, so glad that you have found us, you must feel so isolated and scared.
We are obviously not medical experts on here, but you now have your forum family to support you and if you would like to talk to someone the Blood Cancer UK support line is there for you and they are all lovely.
You have also had these anxieties, fears and the worst feeling of not knowing for 3 yrs now and that is a very long time especially in Covid times.
Starting Uni is enough of a change and upheaval in your life.
Have you got support from family and friends?
Have you got a GP you can talk to?
Perhaps ask for a referral to a haematologist or a 2nd opinion.
I await others experiences .
Please do let us know how you get on and in the meantime look after and be kind to yourself.
Hi @Grant and welcome to the forum.
You are obviously really worried. You know your body best and I think if you are worried then I would definitely push for a referral. It may be worth giving the support line a ring as they will be able to support you with what you need to say to your GP or ENT consultant, they are so helpful.
I think it’s important to do what you can to or your mind at rest. Please let us know how you get on
Thank you so much for your kind response. Uni is a big step forward for me and I’m enjoying it as I thought I would, but I don’t particularly have a support network in place. I’m very introverted and don’t really have friends and i can become quite isolated. It doesn’t particularly effect me as much as it used to now though, I’m very focused on my work.
I have a GP but not a specific doctor, it’s usually whoever is allocated on the day, which is frustrating within itself but nothing can be done. My ENT consultant was very dismissive and assured me that a biopsy was not necessary, but I think I’m going to ask to be referred to a haematologist, as I also have other nodes in my groin area which are slightly enlarged.
It’s such a worry though, I would never wish to be diagnosed with any form of cancer and the doctors say at my age its not likely, which I know, but they haven’t ruled it out completely by taking a biopsy and at the minute I just want to know what’s wrong either way .
Thanks again for the reply, hope you are keeping well within yourself, of course I will update you with any progress!
Thank you so much for replying! I will definitely give the line a call and ask for advice on how to push this further. I know this sounds odd, but I hate challenging medical staff as I know how much pressure they are under constantly, and I can’t often articulate on how to ask for a second opinion or a referral without feeling guilty I’ll be doing this for no reason in the end and have wasted resources that could’ve been allocated better.
Challenging any professional can be so difficult can’t it, especially if it’s not in your nature. However, I really hope the support line can give you some pointers. Please let us know how you get on
Wow Grant, sounds like you have been through the mill with various symptoms that your Gp and ENT havent got to the bottom of yet.
The suggestion to ask to be referred to a haematologist is a good one. This will probably take time so why dont you ask your gp to do more blood tests meantime and tell him all of the symptoms you are having and how worried you are. Try and see it as not questioning medical advice but, giving information that helps the doctor to refer you to the correct specialist.
Keep us posted Grant, and hope the course is going well. Take care
