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 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 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 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? 

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