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

How did the xray go? Any news? 

Been hoping all is well xx

Hi Rose and Danielle..ahh so sorry I haven't replied Danielle. I have only just seen your message. 

I hope you have both had a nice weekend. Have you received your results yet Rose? 

Unfortunately I had to miss my appointment due to the snow. My appointment was early in the morning so I had made arrangements for the school run and then due to the snow it all changed. So I asked them if I could rearrange but don't have a new date yet. Xxx

Oh no, such a shame you had to rearrange!! Hopefully they will fit you in some time soon? 

I went to my GP about the pain in my side and I am having bloods and stool sample. So another lot of results to wait for On the plus side, the gland behind my ear has reduced and seems really small now. Still have the pea sized lump in my collarbone which worries me, but I take solace from the knowledge that yours was benign Sallx so sometimes these things happen. Have your glands started to go down yet, or are they still there? 

Hope that Rose has heard back from the consultant now?? Xx

Hey both! Sorry you've both still got some waiting ahead.

I still haven't heard anything and don't have a number to chase anything so, apart from an appointment next week with the consultant I have no idea what's going on!

I'm frustrated and so fed up of waiting on top of the anxiety of still not knowing the biopsy outcome.

Still, I'm sure all will he ok soon!

Stay strong both xxx

Update to say the hospital phoned today and I have a CT scan this Saturday at 9am and then a consultant appointment on Wednesday so hopefully I'll know something then xx

Hi Danielle, 

Aww I hope you get these tests sorted soon. The wait is horrible. But I'm glad your doctor is getting it all checked out for you. Where abouts is the pain in your side? 

Oh I'm so glad that the gland behind your ear has gone down. That's very reassuring! Well I've had a couple of mine for a while now so I'm not expecting them to disappear really. Although they do sometimes feel much smaller...they seem to fluctuate in size but they've never actually grown, if that makes sense.

The lump on my head has gone. Although I wasn't overly worried about it being connected, I'm very pleased that it has disappeared! I haven't actually been checking them much either. I am still worried, but it's much better now I'm not constantly checking them. 

I haven't heard anything about my chest x-ray yet, so hopefully I can get another appointment soon. 

I hope all goes well with your tests and you get some positive news soon. Xxx

Hi Rose, 

Oh I'm so sorry to hear you are still waiting! I'm not surprised you're feeling fed up and frustrated with it all. I really feel for you and can't imagine how difficult it must be. 

I'm glad they've now been in touch and you have your appointments sorted. Did they have any idea whether your results have come back, or was it just the appointments department who called you? 

You are being unbelievably strong and must have so much patience. This horrible wait will be over soon and I'm sure all will be okay too. Please keep us updated...I'll be thinking of you. Stay strong xxx 

Hey!

So, still nothing conclusive but today I had a CT scan to check my neck, chest, abdomen and pelvis.

My consultant has ordered an emergency referral to ENT as she has said the lymph node needs to be removed ASAP to be fully biopsied and also due to it's size.

I'm still hoping it's not lymphoma but pleased whatever it is will be removed soon!

I have a telephone consultation with my haematology consultant on Wednesday and will hopefully hear from the ENT consultant soon to book surgery.

Fingers crossed for a worry free Christmas time soon! 

Hope you are both OK and that things are settling down slowly? Xxx

I'm so sorry to hear that! I was hoping you would get the results and that would be the end of it for you, but like you said, it's good that it's getting removed and checked out. Let's hope no news is good news. 

Yes I really hope this is all out of the way for you by Christmas. Honestly, you're being unbelievably strong and staying positive which is wonderful. 

I had a call yesterday to check why I didn't go for my chest x-ray, so it appears they didn't get my message, but there was no way to speak to anyone. So that should be re-booked soon hopefully. 

I hope you both have a lovely weekend xxx

Morning ladies,

What a horrible wait you have Rose, but as you say, the Dr's are on top of it so that node will be gone soon and hopefully all will be fine. So pleased you are getting the tests you need and hopefully they give you reassurance. 
 

sallx- pleased that your glands haven't gotten any bigger and you feel more settled. Let us know once you've rearranged your appointment. 
 

Im a bit all over the shop at the moment. I had a letter from the ENT consultant on Friday, you know just the letter they send to the GP for their notes and they copy you in. It said he felt glands on both side of my neck during examination  (as well as the two I'd identified elsewhere) so that freaked me out as I didn't know that. But he also said that there were no concerning features of any of the glands and he was only referring me for an ultrasound for reassurance. So mixed news there. 
 

my stomach issues have been getting worse though :-( I'm having a lot of pain and change to my toilet habits. I have had a blood test to check for tumour markers for bowel cancer, I call up for the results in a couple of hours. I'm so so nervous. I don't know if these tummy issues have come about because I'm so nervous about my swollen glands, or if it's a separate issues altogether. My anxiety is causing havoc right now, it's so hard to separate it all out. 
 

anyway, sorry to go on, it's been very comforting talking to you both, thanks for taking the time xx

Oh dear Danielle, I hope your tummy settles soon. Any time frame on your ultrasound?

Sallx - gutted your message hadn't been received about the xray - have they given you any indication of when it could be done?

I saw the ENT consultant today who did a camera up the nose and down my throat - gross! He said my CT scan results were back and it was clear! Yay! Only showed the one lymph node and this was confirmed by the camera today - so that's great!

He also said that the ultrasound scan said 'probable lymphoma' and my biopsy result was 'probable lymphoma' - it was then sent to the lymphoma panel who said it was inconclusive as they didn't have enough tissue left to re-test.

I may have to have another biopsy :cry: He said he's presenting my case to the whole cancer MDT next week to decide if it should be treated with radiotherapy before removal or if it should be taken straight out. So, more waiting! 

Again, I'm keeping positive that it is not yet confirmed as cancer and that, if it is cancer, it will be easily treated. Just hope I get a diagnosis soon :happy:

This chat has been such a reassurance as I feel like I have to stay strong in front of the kids so it's nice to be able to offload to you both - thank you xxx

Oh dear Danielle, I hope your tummy settles soon. Any time frame on your ultrasound?

Sallx - gutted your message hadn't been received about the xray - have they given you any indication of when it could be done?

I saw the ENT consultant today who did a camera up the nose and down my throat - gross! He said my CT scan results were back and it was clear! Yay! Only showed the one lymph node and this was confirmed by the camera today - so that's great!

He also said that the ultrasound scan said 'probable lymphoma' and my biopsy result was 'probable lymphoma' - it was then sent to the lymphoma panel who said it was inconclusive as they didn't have enough tissue left to re-test.

I may have to have another biopsy :cry: He said he's presenting my case to the whole cancer MDT next week to decide if it should be treated with radiotherapy before removal or if it should be taken straight out. So, more waiting! 

Again, I'm keeping positive that it is not yet confirmed as cancer and that, if it is cancer, it will be easily treated. Just hope I get a diagnosis soon :happy:

This chat has been such a reassurance as I feel like I have to stay strong in front of the kids so it's nice to be able to offload to you both - thank you 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