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 Sallx, 

Glad to hear things are looking up for you and everything is hopefully fine. It is hard not having a definitive answer though I'm sure.

I had my first hospital appt yesterday, very quick with a lovely ENT consultant. After feeling my neck and hearing about my ongoing itchy legs, and my elevated ESR in my bloods, he referred me for a chest, neck and abdomen PET-CT and an ultrasound guided core biopsy. He said I should have the tests done in the next week or so so fingers crossed I get the letters soon. He was quite frank with me though and basically said it is very very likely a lymphoma given all my symptoms and the size and number of my enlarged lymph nodes at the base of my neck, they are rock hard and there's a bunch. He said really the bigger concern is that it originated somewhere else, hence the chest and abdomen PET-CT. Fingers crossed it is local and I've caught it early, but I've had symptoms for months and only a lump on neck for a few weeks so I am a little worried.

I'm so sorry to hear this. I hope you are managing OK. Its good that they are getting things done quickly but I bet it still feels like a lifetime. There's still that small chance that it could turn out to be something less serious and I really hope that's the case for you. But I know in your situation it's best to prepare yourself as your doctor has done. 

If it does turn out to be Lymphoma, hopefully you have caught it early. I'm sure you know that a lot of lymphomas are very slow growing and you can even have some for years before you get symptoms. So even though you've had symptoms symptoms a few months, it could still have been caught very early. Again, I'm sure you know that a lot of lymphomas have a really good chance of being treated successfully and making a full recovery. I know that won't ease your worry, as you must be so scared right now. But hopefully it helps a little. Stay strong and we're here if you need to talk anytime xxx

Hi Sal, so pleased to hear your recent tests have gone well. How frustrating that the collar bone nodes couldn't be viewed, but as you say, the bigger picture is that everything is fine so that can only ever be reassuring. You're so right when you say sometimes we will never know why something has happened, so we have to accept certain things and move on. 
I do hope Rose is doing ok, I've thought about her a lot. 
Danielle x

So sorry to hear your possible diagnosis Judgey, as Sal says there is still a chance it may be something else but you are wise to prepare yourself for a lymphoma diagnosis. Keeping everything crossed that it's localised to the neck. But know this- lymphoma is one of the rare cancers that still has very high treatment success rates even when caught at stage 3 & 4. From what I'm told- this waiting part is actually the worst bit. Once you know what's what and start your treatment, you're going to feel an awful lot better and you will come back here and tell us how you have kicked it's butt xxx

Hi all - sorry the radio silence. Rocky few days but all ok.

I'm pleased that overall everything's ok Sally but it is frustrating about the pesky collar bone nodes - I'm sure that anything sinister would have been picked up but always good to keep an eye. 

I'm sorry to hear your story Judgey - doesn't sound like a particularly cool way to be told news but I'm sure they know what they're doing.

Well, I'm 1 chemo session down and so far the worst thing has been the inconvenience of my PICC line (as I wasnt expecting it I suppose!) Tomorrow is a clinic day and then chemo again on Monday. It's tough but, as I keep reminding myself, I'm tougher!

If anyone needs me please give me a shout - I'm sorry if it takes a while to get back but I will answer promise.

Sending you all love and light xxxx

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 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. 

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

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

Hi Chloe, 

Oh yes, you're absolutely right. It is extremely hard to stop worrying and forget about it. Even if you manage to, it always finds a way back unfortunately.

Oh dear, it sounds like you've been through a lot. I hope you're okay now. Hopefully you won't have to wait too long and this time will have a similar outcome. I'm sure having an autoimmune disease can't be nice either, but I'm glad you've managed to get it under control.

No I haven't been tested for anything like that. But it's definitely reassuring to know that it can be caused by many different things, as we always tend to jump straight to cancer. 

I don't think I'll be asking for anything else right now, but I'll see how it all goes and if anything changes. Its hard to block it out completely, as the lumps in my collar bone are so prominent right now and hard for me to ignore, plus I have lots of squishy lumps in my groin area now too and a few other places.

I've never, ever had any swollen lymph nodes that I could feel like this before, anywhere on my body. Obviously when I've been very unwell or had tonsillitis, my neck has got swollen and the tonsillar lymph nodes have swollen up like golf balls, but I've always known the cause and they've gone back down. I know that almost anything can cause them, and my daughter even has some swollen lymph nodes in her neck from years ago, that have never gone away. But it's just difficult to process when you've gone 30 years without any obvious 'lumps' and then they seem to be randomly appearing everywhere. But doctors know what they're talking about, so I will take them at their word and hope for the best. One of life's big mysteries!

I really do wish you the best of luck with your scan and hope you get some good news too. Always happy to listen as I can't tell you how much this helped me through when I was so scared. When you first get these symptoms you feel so alone, but its so lovely to have all of this support from people who understand. Lots of love 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!