Just an update in case anyone comes across this post. I will keep updating, as I know this forum has helped me so much and its always good to hear the final outcome, either way. 

So, I called the hospital and I'm booked in for a chest x-ray in a few weeks. However, the ultrasound of my neck is going to be at least 16 weeks! So I have called a private hospital and I'm going to have my scan done there to speed things up. 

I checked my notes from the GP on my online records and the GP is concerned and put the referral through as URGENT. However, there is also a comment stating 'doesn't appear to meet the 2ww criteria.' So although this is a good sign that the GP hasn't put it through as the two week referral, during my appointment he was concerned and said he wanted it done urgently. So on the one hand I'm thinking I should just wait as the GP can't be that concerned, but on the other hand, there is no way I can wait 16 weeks with this worry. So the cost of the scan will be worth it, even if just to save me 16 weeks of worry and give me some answers. Apparently I'll get the scan results there and then. X 

Hi, I am also playing the waiting game for a swollen lymph node diagnoses. My lump is in the right side of my neck and has been present for around 6/7 moths but getting bigger.

I had a GP referral (non urgent) for an ultrasound which happened just over a week ago. The Dr took two biopsies and said that my results would be fastracked and the the hospital would be taking over my care. 

I have an appointment with the haematology consultant on the 24th and the wait is really starting to get me down. I'm trying to stay busy and distract myself but it's tricky at times.

Sending you strength and support xxx

Hi rose, sorry just found this thread and wanted to say I'm sorry to hear of your diagnosis but your on right path with your treatment and by sounds of it your coping really well! I just wanted to ask you, I too have found a lump in my neck, to be honest I found a rock hard one behind my ear first which made me go prodding on my neck. You mentioned your sisters and friends noticed the change in size, so it was swollen enough to see. At the beginning did you have to press to feel the lump? The one in my neck id say is about 2 inches not round or rock hard like behind my ear but it's defiantly there. I can't get a doctors appointment, worse gp centre ever so I'm in middle of changing and will have to wait to see gp. Out of my mind with worry thank you if you see if you see this and reply, hope all is well xxx

Hi Hmr2711,

I'm so sorry to hear you're so worried. My experience is the only knowledge I have so please don't put much stock in what I say!

I never had to go searching for my lump by feeling around as it was prominent and could be seen - because of where it is and how big it is. 

2 inches sounds big- is it worth doing an online consultation thing if your doctors offers this service? 

Please try to stay as calm as possible as, I'm sure you've read from the other contributors on this thread, it doesn't make you feel any better. My type of lymphoma, although aggressive, doesn't depend on being caught early for treatment which is amazing.

Please look after yourself and be kind to your self too.

Lots of love xxx

Hi Danielle, 

Aww thank you and hope you're keeping well. Yes it's good news so I'm very pleased. It is frustrating as if she had been able to see them and say they're cysts/ or whatever they may be, then I'd be 100% satisfied. Obviously without that, there will still be that little niggle. But I just need to try and ignore that now and move on. I'm very lucky and very grateful and If it was anything serious hopefully something would have been picked up. Like we said, sometimes we will never know. 

And Rose I'm sorry to hear you're having a difficult time. I can't imagine what you're going through, but you are definitely tougher and will beat this. Take one day at a time and let your lovely family look after you. Those cuddles from your children will get you through. You really are incredible. 

Sending lots of love xxx

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. 

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. 

No problem at all. Ahh yes they are probably erring on the side of caution with you having those other symptoms too. But there is still hope. Prepare for the worst but hope for the best. I'll be keeping my fingers crossed for you. 

Thank you. I'm ok and I'm just going to try and ignore them now unless anything changes. It is frustrating as if I had a scan right this second, they are very prominent and right in that dip. Its like a swelling that comes and goes, except with lumps. But it is what it is. I was expecting bad news months ago and so far so good, so I really can't complain at all. Take care xxx

Hi everyone,

I had my CT scan on Monday and Ultrasound and core biopsy today. No results from the CT yet but I had the loveliest darling of an US consultant who really made me feel at ease in such unpleasant circumstances. I think he will stay in my mind for a long time. He did say the nodes looked like it will be lymphoma. Luckily he only had to take one core sample so I'm not too sore but it feels like my neck lump has doubled in size since I first noticed it a month ago, so I'm very concerned it's going to be diagnosed as a high grade NHL, like diffuse B cell... It feels like there's more pressure on my collarbone now and it's quite uncomfortable on a daily basis. Trying to stay positive but honestly just want them to remove it ASAP so it can stop being a constant reminder. Hopefully I will hear back about conclusive diagnosis soon as the waiting is killing me - have done many jigsaw puzzles and bought myself a Nintendo Switch as a distraction as I haven't been up for working on my PhD lately and have very little to be doing.

Hope you are all well and have more positive stories to share!