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,

blimey, they've been putting you through your paces, haven't they?! My partner keeps saying to me- it's not cancer until they tell you it's cancer, and that's what you have to remember. As you say, worst case scenario it is a lymphoma and sounds like they are already formulating a plan. As you probably know, lymphoma is highly treatable and in most cases, completely curable, particularly if you only have one as it's likely early stages. But no need to go there in your mind until they tell you more. The camera up the nose sounds icky, you absolute solider going through all these tests.. you're my hero right now!! 
 

My stomach has really settled. I've been drinking this powdered tea with vitamins in it for the last month or so (to compensate for the weight I'd been loosing through anxiety).. anyway, I decided not to drink it today to see if that helped and.. it really has.. so I actually think I might be intolerant to one of the ingredients! My tests for inflammation in the bowel all came back clear, so hopefully I've solved the problem. 
 

My ultrasound is in a weeks time on Dec 15th. Hoping for a good result. 
 

Please keep us updated Rose. I think you're dealing with this amazingly- us mums have no choice but to keep it moving hey?! It will all be OK in the end regardless xx

Hello both of you, 

So sorry, I hadn't seen either of your updates. I came on here to ask how you were both doing and saw you'd both posted. 

Rose, I'm so sorry that your biopsy was inconclusive and they've stated 'probable lymphoma'. As you said, it's not confirmed so try to stay as positive as you can, although I know that will be incredibly difficult. I have seen posts where people have been told it's almost certainly lymphoma, for it to come back all clear. So there is still hope and I pray you get some good news soon. I honestly admire how strong you seem to be and I'm so happy we all have eachother to talk to. 

Danielle, you sound exactly the same as me. The doctor felt multiple swollen lymph nodes in mine and even on the ultrasound, but the doctor who did the ultrasound wasn't concerned as he felt they were reactive lymph nodes. As you know, it put my mind at rest massively, but then I occasionally still feel them and it starts my worry again. Like you, I also have stomach issues, which I haven't been connecting to this. I was diagnosed with IBS years ago, so I've been putting it down to that. Last week it was awful...I was in pain, constantly going to the toilet and it seems to have eased off again now. I really hope you also get some answers soon. It must be so difficult with all of these symptoms and the waiting. You're being amazingly strong too. 

And I know exactly what you mean about separating the anxiety. I don't know what to trust anymore. I know the symptoms are real, but I dont know whether I am over worrying or whether I'm noticing more just because if my anxiety. I still haven't heard anything about the chest xray yet. I definitely want to have it done but I'm also terrified as I'm convinced they'll find something wrong. Again, that may be my anxiety but it really does take over and convince you of the worst. 

Hope you both manage to have a lovely weekend xxx 

Thank you both,

I really hope you both get clear results very soon - I'm keeping everything crossed for you. I'm so proud of how you're both coping with these uncertainties.

I have to have another biopsy on Tuesday where they've said,  if I can tolerate it, they want to take three samples to ensure an accurate diagnosis. The node is over 3.5cm so big enough to go into a different part than last time. In all honesty I'm dreading it as it is not the most comfortable thing and the node capsule is rock hard. Still, hopefully that will be the end of this whole thing.

In all honesty the hospital have been amazing! I've had so much support and help and even a booklet with the staff names, photos and phone numbers. I can't fault the service they've given me. It's given me confidence that if I do need them I'll be fine!

So my plan now is: if it's benign then it's straight to surgery (although they have pre-warned me it's a complex surgery because of where the node is) and if it's not they will treat with radiotherapy, drugs and then possibly surgery.

Hope to know soon what's coming soon.

Take lots of care both - sending you strength and light xxx

Oh Rose, you're such a trooper. Whatever the outcome of the biopsies, this is all going to be over very soon. I can only imagine that the biopsy will be uncomfortable but hopefully it'll be super quick- and please make sure you line up a lovely treat for afterwards- your favourite dinner, a nice bottle of wine, a good movie.. something to look forward to as reward for being such a star!! 

Sallx- I really find I don't know where to untangle the anxiety from the facts sometimes. I have such a strong emotional reaction to everything. I'm quite a positive person generally but so catastrophic when it comes to my health! I think once you have this x-ray you will really be able to get some closure. Let us know when your appointment comes through. 
 

Have a great weekend ladies! One of my daughters is at a sleepover so me and my youngest had a little disco, played poker (!) watched a movie and now I'm in her bed having a 'sleepover' with the dog squished in between us haha! X

Hi ladies,

I had my ultrasound today, it went ok, they said the glands looked like completely normal reactive nodes. I wish I could say I feel better but I've got myself so worked up I still feel highly anxious. But anyway, it is a great news and hopefully my nerves will settle soon. 
 

Good luck with your biopsy Rose, do let us know how you get on xxx

Oh I'm so thrilled for you Danielle - that's excellent news :happy:

I completely understand that it will take you some time to unwind a bit for the good news to settle but it's such positive news before Christmas for you.

I had my second biopsy yesterday where they took 3 samples. It was a really difficult procedure as the node capsule is like stone and I had a doctor learning to do neck biopsies and my consultant doing it. 50 minutes of my neck being pushed really hard :cry: Very sore and bruised now but it's done! Consultant was convinced they got 3 good samples so I'm keeping everything crossed that this will be the end of it! She also said I should know before Christmas what we are looking at but I remain convinced it's benign. 

Hopefully I'll get my good news like you Danielle very soon!

Well done for having your ultrasound and I hope you manage to start to relax very very soon xxxx

Thank you Rose, I've just spoken to my family and had a bit of dinner so I feel a little bit more settled :-) 
Oh my gosh, well done for yesterday! It's done now, worst of it is over. Now you can get answers and a plan. Glad you are staying positive, there is every chance it is benign. Keep your chin up and enjoy Christmas, at least you and I have got Covid out of the way! Xxxx

That's fantastic Danielle! I'm so pleased for you. I'm sorry you still feel anxious, but hopefully that will ease in time. I felt exactly the same at first. I spent so long worrying and preparing myself for bad news, that when the doctor said they were reactive lymph nodes, I was so happy-but it also takes a while to take it in and switch your way of thinking. 

I find myself not thinking about it for days now, then my neck will hurt slightly/twinge, so naturally I have a feel and notice that there's still lots there, which restarts my worry all over again! My eldest daughter was very poorly when she was little and she had lots of swollen lymph nodes in her neck. She is now 11 and they're still there, so I know first hand that it can be normal. 

I hope your stomach issues are better now too.

Hopefully you can have a lovely, worry-free Christmas now. Xxx 

Hi Rose, 

Aww I'm so sorry you had to go through that. Well done for getting through it-another hurdle crossed. I hope you're managing to have a very well deserved rest now to recover. 

I'm so glad you're remaining so positive. It really is the best way to be! Just look at me, absolutely worrying myself sick and convincing myself its the worst possible outcome...I think its a defence mechanism in a way! If I prepare for the worst, then nothing can catch me off guard. But really, I end up worrying myself and being miserable for days/weeks, when there is no need! You just end up hurting yourself with that attitude. Whereas your attitude is amazing Rose, and I think we all need to take a leaf out of your book! 

I am hoping, praying and keeping everything crossed that you get some amazing news any day now. Keep smiling and stay strong xxx 

Good evening both - how are you doing?

I was due to get my results this morning via telephone consultation with my consultant. Long story short - the results are not ready and there's apparently no sign of them being available imminently :cry:

I had my whole heart set on getting the all clear today, just in time for Christmas but, unfortunately, I still have some waiting to do. I'm absolutely gutted. I am sorry for moaning and I do understand there's bigger things going on in the world right now. I just wanted so badly to be able to have Christmas without this hanging over me.

Still, tomorrow will be better and I'm sure I'll be feeling less sorry for myself in the morning!!

Sending you both light and strength and again, sorry for moaning! Xxx

Good evening both - how are you doing?

I was due to get my results this morning via telephone consultation with my consultant. Long story short - the results are not ready and there's apparently no sign of them being available imminently :cry:

I had my whole heart set on getting the all clear today, just in time for Christmas but, unfortunately, I still have some waiting to do. I'm absolutely gutted. I am sorry for moaning and I do understand there's bigger things going on in the world right now. I just wanted so badly to be able to have Christmas without this hanging over me.

Still, tomorrow will be better and I'm sure I'll be feeling less sorry for myself in the morning!!

Sending you both light and strength and again, sorry for moaning! Xxx

Hi Rose, 

Aww I'm so sorry to hear that! It's ridiculous how long you've had to wait. It must be absolutely awful for you, especially after being told the results should be today and getting let down. 

Please don't apologise - thats what we're here for if you ever need a chat or someone to talk to. I hope they manage to get the results quicker than currently expected. But if not, then I really hope you manage to have a nice Christmas. Its easy to say try not to think about it, but I know that's pretty much impossible. So try to stay strong and positive as you have been throughout, and hopefully you'll have some amazing news to take into the new year with you. Xxx

Oh Rose, how maddening.. I can not believe it is taking so long for you to get your results, this is where we are seeing the effects of COVID and the backlog of work that is stacking up. How frustrating that you won't know before Christmas, I'm so sorry. However, this changes nothing really- you still have a plan regardless of the outcome, and you can continue to feel just as sure everything is well. 
 

Sometimes I allow myself 30 mins to worry, wallow and generally feel ***, then I say to myself- I'm doing other stuff now. I'll come back to this tomorrow when I can have another 30 mins of being anxious. I think it's helpful to compartmentalise things if you can. 
 

It sounds like you won't know much more til New Year now. Make sure you keep yourself busy in the week inbetween so you don't find yourself ruminating. I'm sure you will have plenty to do. Hope you manage to enjoy your Christmas best as possible, and you Sallx.. have a great one. Will be thinking of you Rose. Here to chat anytime btw!! Xxx

Thanks Danielle, 

Hope you have a great Christmas too. 

I've had the letter about my chest xray today and it's a walk in clinic so I can go when it suits me. Honestly I'm feeling too scared to go at the minute. This morning I noticed the lumps in my collarbone again, which I thought had gone. So it's started my anxiety all over again. I'll try to go between Xmas and New year but I'm so worried. 

It's nothing compared to what you're going through Rose. And I really do admire how strong you're being. 

I hope you both have a wonderful Christmas xxx 

Hi Rose, 

How are you doing? Have you had any news on your results yet? I really hope you have had some good news by now. Did you manage to have a nice Christmas? 

I hope you are doing well Danielle and hope you've had a lovely Christmas too.

I have unfortunately let worry get the better of me over Christmas. When this first started I had the lymph nodes in my neck and I did feel a little something near my collar bone just before the ultrasound, but barely noticeable and I had to search for it. But just before christmas I noticed quite a few lumps in my collar bone (supraclavicular lymph nodes) both sides. They are quite big, they do move around and feels the same both sides. You can't miss them. I know we shouldn't google, but I have and apparently having swollen lymph nodes there is always concerning and more often than not something serious. I am trying to stay positive though, but it really does have me worried. 

I have made myself go for the chest xray today, as it was a walk in appointment and they've been closed a lot over Xmas. I was too scared to go, as I'm convinced they'll find something, but I made myself get it out of the way. It was over very quickly, literally in there for about a minute. So now I have to wait for those results. 

Sorry for the moaning, just feel like I'm back to square one again. Xxx

Merry Christmas Sally and Danielle - hope you've been enjoying Christmas?

Oh Sally, I'm sorry to hear that you're feeling anxious again :cry: I'm really pleased that you went for your x-ray- that's excellent. From memory the results from an x-ray don't take very long to read? You may be able to contact your GP for the results in the very early new year - you could also mention at the same time about the lymph nodes you have near your collar bone?

How big would you say the nodes feel? Could you take a photo of them? Just thinking the more information you can give the GP the quicker they can triage you and refer you onwards if needed. Do you have e-consult where you live? That may speed the process up a little more too?

I'm afraid I still have no answers but last time it took this long it was because the results had gone to the lymphoma panel for review so we'll see. Fingers crossed I'll hear in the very early new year as its so stressful having to wait.

Sending you both strength and light xxx

Ahh Rose, I am so sorry you still haven't had any news. It really is awful to have you waiting this long. I'm sure they're trying to hurry it up, but it's really not fair on you. I hope you have still managed to have a nice christmas and hopefully you'll hear very soon. You deserve a pamper or a nice treat of some sort, for being so strong and positive throughout all of this. 

I asked today and they said I should have the results within 10 days. And yes, I can do an online consultation and send it to my GP, so I thought about maybe doing that to let him know whilst I wait for the chest xray results.

I'm not really sure how big they are. It feels like there are about 3 each side, just above the collarbone in the hollow part. But it's hard to tell whether they're connected to each other or separate, if that makes sense. Plus there are at least 3/4 on the left side of my neck still. 

If the chest X-ray comes back clear, I will be very surprised but that would put my mind at rest a lot. I still think these nodes would need looking at, just to be on the safe side, but I'd feel a lot more relaxed about everything. I was very relieved after the ultrasound and I am still taking some positivity from that, thinking surely that doctor would have spotted something, but now it's getting worse so I just don't know what to think. 

Let's hope we have some good news to start 2022. 

Please let me know how you get on when you hear anything. I am thinking of you and keeping my fingers crossed for you. Xxx

Hi Sal, oh no that's so terrible that your worries have amplified, so sorry to hear that :-( I have made a promise to myself to stay away from Google. It makes everything so much worse. One of my swollen nodes is on my collar bone and I did the exact same thing- I googled that and was told it was nearly always bad news and I freaked out (hence ending up on this forum!). At my ultrasound, they couldn't even see the node on the screen though I can definitely feel it! Remember that there are hundreds of people who have had nodes swell in their collarbone after having the vaccine, so that could be the cause too. For your own peace of mind, don't dally- speak to the GP asap and get the ball rolling. It will help you feel more in control. I know we're all terrible for doing this but don't diagnose yourself! Keep busy, plenty of distractions and plenty of self care. Well done you for going and getting the chest x-Ray and being so proactive. 
 

Rose- hope you had a lovely Christmas. Can't wait to hear from you with some good news in the new year!!! Xxx

Ahh thanks Danielle. 

I have read about a lot of people getting them after the vaccine so I'm really hoping it is that. But I did have my vaccine ages ago and they only seem to have popped up now. It feels like every time I feel positive and stop worrying, I find something else. 

I'm just hoping and praying that the chest xray is clear. 

How are you feeling Danielle? Are your stomach issues any better? Xxx

Hi Sal,

My nodes didn't get enlarged until months and months after I'd had the vaccine, so I wouldn't link it to time. You'll get to the bottom of it I'm sure, and it's usually the simplest explanations in the end. Please keep talking to us if you feel worried, no need to suffer alone. fingers crossed for the chest x-Ray being clear. You are being a total trooper, not much longer to go til you get your results. 

My stomach issues seem to have eased a little. GP did more tests, all came back clear which is reassuring. So it's looking like IBS at the moment, which I can deal with. 
 

hope you had a lovely NYE, I went for a meal and a show with the family, it was lots of fun. We are going for a dip in the sea shortly (cold water therapy!) to see in the new year! 
 

Danielle xx

Hello both,

Just checking in to see how you're both doing?

xx