No they don't offer that service. I don't have to press hard if I just run my ringers over side of neck you can feel it but can't actually see any sign of lump when I look in the mirror. You can see the one behind my ear by just looking tho. Hopefully it's nothing to worry about and when I eventually get to see a doctor he puts my mind at ease. Thanks for taking the time to reply hope your feeling ok xx

Hi Sallx,

So glad your tests came back fine again! Hopefully you cam start to put it behind you now, and finally have some reassurance! 

I'm still waiting for my ultrasound (but it's only been 2 weeks and it was non-urgent) and I've been doing relatively okay up until today. I hadn't been touching them and felt so much better for it, but had an itch onmy neck yesterday and there another hard lump in my neck which wasn't there before. I just want this all to end and don't know what to do with myself!

Praying my ultrasound comes through soon!

Chloe x

Hi Chloe, 

Thanks so much. I'm very relieved. 

I'm sorry to hear you are still waiting. It's awful. Obviously I know everyone's situations are different, but this sounds exactly like what happened to me. I just had more popping up and some are really hard, but I didn't feel unwell or have any infection. I just kept thinking that something must be causing it and it kept getting worse. They're still there now but I've been told everything seems ok. I went into that first scan almost certain that I would receive bad news, but you just never know. 

It definitely helps if you can avoid touching them too, like you have been, or set yourself a limit on once or twice a week just to see if there are any changes. I'm still having to tell myself not to touch mine now, as I got so used to it that it becomes habit. 

So I hope and pray you get some good news soon too. In the meantime, we all know how awful that waiting game is, so anytime you need to talk we're all here. Lots of love xxx

Hi Chloe, 

Sorry to hear you're still waiting on an US. If you dont mind me asking, how large are you lumps and are they visible? 

Hi Sallx, 

Was it in your US that you were told it seemed ok? 

I'm scheduled for whole body CT with contrast on Monday, and US guided biopsy on Wednesday next week (so fast! I was only at my first consultant appointment on Monday evening). I've had bloods done and not much else but my nodes are huge, I think theres about 8 all on my left side, all rock hard, the largest about 3-4cm..you basically can't see the dip behind my collarbone at all as it's full of tissue and bulging. But, I've not had any imaging done yet! Just a good fondle by an ENT consultant who said it's very likely to be lymphoma. My ESR was 17 in my bloods which is only slightly elevated so I'm not sure if they're just so big that it can't be benign or what. But maybe there's a chance they'll look ok with the US?? 

Hello, yes I was told at my first ultrasound back in October that they look like reactive lymph nodes. I've only recently had bloods and another ultrasound, because more have popped up. Mine are also on the left side of my neck and some in the collar bone area both sides. Bloods were normal and the ultrasound again said they look like reactive nodes, but they couldn't see the ones around my collar bones to tell what they are, even though we can feel them. 

Right now, the dip behind my my collar bone both sides is full, and I can feel some really hard lumps. They're not huge like golf balls or anything, more like pea sized maybe slightly bigger and about 3 each side. But uts very full and you can't see the dip. But sometimes, it seems to go back to normal/empty and the lumps sit or hide right behind the bone. I've no idea what it could be, or what could be causing it. But nothing was picked up so for now I'll just have to try and forget about them. 

I really hope that your tests come back OK too. I'm not sure whether they can tell without tests. I mean, I'm sure they can't be 100% certain until they've done some sort of scan/biopsy, but maybe they just want to prepare you for the worst case scenario. I really hope and pray you get some positive news. I can't imagine how awful the wait must be after being told that by the doctor, but I'm glad they're getting you sorted quickly. Hopefully you'll have some answers soon. Sending lots of love xxx

Thanks for the info Sallx. I'm glad your tests are continuing to look good and not concerning, fingers crossed they can do something to alleviate your concerns about the nodes behind the bones! 

I think they are preparing me for a diagnosis as I have had chronically itchy legs for months, where I scratch to the point of bleeding, and night sweats occasionally. So I presume they are adding 2+2 to get 4 rather than 5... But hopefully they are just erring on the side of caution.

Thank you for your well wishes, I'm glad my appointments are soon and hopefully I will have answers. 

Hello,

The lumps aren't massive and you can't really see them. I can see them but I think it's because I'm hyper aware of them, I asked family and friends and they all say no. I would say they are all about a cm or less. 

I do have one big but flat lymph node on the left side which is about 1.5-2cm but I had this biopsied in 2018 and it was just reactive. It got smaller eventually but never went away

 Its worth nothing the cause of thay big node was actually Lupus, an immune condition! So there are so many things thay can cause similar issues! 

Let us know how your scan goes and here to chat if you need x

Hi Sallx,

I agree, no touching makes you much less worried. But then I find myself worrying about how I'm not worrying and it's a vicious cycle! 

I think our bodies do crazy things. It's worth noting I had a biopsy for a massive lymph node back in 2018 (rock hard and visible) but it came back benign. I had a PET scan which showed generalised lymphadenophy and after loads of tests got diagnosed with Lupus (autoimmune disease) and with medication they settled down. Have you had any tests for these? Part of me believes these nodes are all due to that, but I can't shake the what if. 

Thanks for listening again! Chloe x