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

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

Hi Rose,

I've not been too bad thanks, my anxiety seems to be settling a little and I had a letter from the hospital to say they didn't think the results of my scan were concerning so I'm feeling a little more reassured. 
 

How are you?? Have you heard from the consultant yet or are you still waiting?? Xx

Oh Danielle, I'm so pleased to hear that - excellent news xxx

I do, finally!, have my biopsy results and a diagnosis.

I have Hodgkin's lymphoma.

It's hugely treatable which is great. I'm waiting for one final scan and then I'll be starting chemotherapy followed by radiotherapy. 

All is going to be well though and I'm so pleased to have a plan in place.

Sending lots of love and fingers crossed Sally's OK too xxx

Oh Danielle, I'm so pleased to hear that - excellent news xxx

I do, finally!, have my biopsy results and a diagnosis.

I have Hodgkin's lymphoma.

It's hugely treatable which is great. I'm waiting for one final scan and then I'll be starting chemotherapy followed by radiotherapy. 

All is going to be well though and I'm so pleased to have a plan in place.

Sending lots of love and fingers crossed Sally's OK too xxx

Hi Rose,

I'm sorry the lump wasn't benign but I'm glad you finally have some clarity and a clear plan in place. I hear that chemo and radio are much less challenging than they used to be what with the advancement of medicine. Having done lots of googling on lymphoma I know that it is so very treatable, especially if contained to one area, so you're going to be treated and recovering very soon! Which is a positive in a negative situation. You have an amazing mindset and that is what's going to get you through this. 
My dad had lymphoma, stage 4b but his treatment was very successful and he has lived cancer free for many years now despite having the unhealthiest lifestyle ever! I have no doubt that your positive attitude and a great team of Dr's will see you through this, just like my dad, who is now living his best life!

Please let us know how you're getting on with your treatment. Hope all is well with the family and they are giving you lots of support xxxx

Hi Rose, 

I just came on to check how you were doing and saw your reply. I am so sorry to hear that, I truly am! You've had such a long wait and been so strong throughout. I'm sure you're relieved to finally have an answer and a plan for treatment, even though its not the news you were hoping for. I have no doubt that you will remain strong and show it the door. You're amazing! 

I have had my chest x-ray results and they were all clear, so I'm massively relieved. However the GP does want to see me again this week, as he isn't happy that the lymph nodes are swollen around my collar bone since its such a worrying place. So I'm still uncertain, but hoping for the best, especially since the chest X-ray didn't pick anything up. I am going on Friday so we will see what he says. 

I hope you're well Danielle. I am really hoping that it is due to the covid vaccine - that would absolutely be the best case scenario. And I'm glad your stomach issues have eased a bit. IBS is not pleasant but once you know what works for you it's manageable.

Sending lots of love to you both xxx 

Hi Rose, 

How are you doing? Thinking of you. Really hope you're feeling okay and staying strong. 

Lots of love xxx

Hi Sally,

Good luck for your doctors appointment tomorrow. 

Thanks for checking in :happy:

I'm OK thanks. I've got my PET scan on Saturday and then I'm back in clinic on Wednesday where I'll probably get my cancer graded and  hear the exact type of Hodgkin's I have. I have found another swollen node,  this time on my collar bone so I think it's travelled a little bit but nothing drastic. 

I'm having my hair cut very short a week today in preparation and so my children know it was my choice to have short hair before the treatment. 

They don't know about my diagnosis yet and we're telling them over the weekend. My heart breaks whenever I think about it but we'll get them through it.

Lots of love xxx

Hi Rose, 

Great idea to get your hair cut short, that way you are taking control. Pick a style you've always wanted and go for it! 
 

The PET scan and grading will be over with soon and you'll have a solid plan, and be on to treatment. The hardest part is the waiting for results I think, and telling people :-( 

I hope it goes well on the weekend. If your children are anything like you, they will have a positive outlook and maybe even be a good support to you? As much as our children can be anyway! They will certainly be a distraction! 

I have a friend who has just finished chemo for bowel cancer. He said it was nowhere near as bad as he thought it'd be. Tbf my dad said the same thing and that was twenty years ago. I know it hits people differently but I think you're going to get through your treatment and be done with this quicker than you think. 

How are you feeling in a day to day basis? Are you managing alright? 

And Sal, would like to know how you're getting on too. Great stuff that your ultrasound and x-Ray have both given some reassurance, but I like that your GP is on the ball :-)

lots of love, Danielle xxx
 

Aww Rose, I really hope you get some answers at your appointment this week and a plan in place. I hope you're feeling okay in yourself. 

That's a brilliant idea to have your hair cut, take control and show the children it was your choice. I hope it went as well as possible over the weekend telling the children. They are so much stronger than we believe and I bet you'll get so much strength and support from them, so that even when you feel like you're having the worst day, their smiles will keep you strong. 

I hope you're keeping well too, Danielle. 

I saw the doctor on Friday and he is sending me for blood tests and another ultrasound on my neck and collar bone areas. So that is booked for 8th Feb. 

I'm not massively worried at the moment...I think I'm all worried out! But it is obviously still a concern. My lymph nodes are still raised and it seems like another pops up every day.  I just hope it's from the covid vaccines or from when I actually had covid, but we will see what happens. At this point I would just like an answer. 

Sending lots of love to you both xxx

Hello sallx 

I was wondering if you had an update regarding this? I'm in the same situation as you.

Im only 21 and had covid in December and my lymph nodes raised at about day 2, since them I feel I've found more and they've not gone down but also not got bigger.

you can't physically see them only when you press on them. 

it's all on my right side, just really worried as my doctor gave me antibiotics and said if they don't go down I must see him and not take no for an answer :( just very worried 

Any advice or help would be appreciated by anyone x 

Hello, 

I'm so sorry you're going through that too. It's so worrying, but try to stay positive. The majority of the time with swollen lymph nodes its perfectly normal and harmless. However if you've read through these posts then you'll see I've worried myself sick, so it's easy for me to say 'try to stay positive', but I know it's very difficult. Of course its important to get it checked out so you've done the right thing. How long have you been taking the antibiotics? 

No, unfortunately I haven't got an answer yet. I know a lot of people have had swollen lymph nodes after the vaccine and obviously any virus or infection could cause them too. Like you, I feel like I'm finding more and more and they aren't going down. You can't see mine either, but there is sometimes a fullness in my collar bone area where they seem to come to the surface more. Mine are mainly the left side, but they're above my collar bone on both sides. 

This has been going on for a while for me so it's really good that you're getting it sorted quickly. They could be caused by having covid and being unwell, since you only had it in December and they can take a while to return to normal and sometimes stay raised. It sounds like your doctor is doing all the right things. If you see no improvement after the antibiotics then they may investigate further. 

I've had an ultrasound and the doctor said they are reactive lymph nodes, and also had a chest xray which was clear. So im relieved about that. But there is still no improvement so I have been referred for another ultrasound and some blood tests. Its so difficult waiting for answers, but we're here if you ever want to talk. Rose and Danielle have helped me so much and it helps to speak to people who know how you're feeling. Xxx

Hi Sallx,

I've been following your post for quite some time now and it had helped with my own anxiety over swollen lymph nodes.

I also first noticed a swollen lymph node back in June (after my vaccine although may have been there before). I eventually forgot about it and it seemed to reduce but then in October a huge clearly visible node popped up which was rock hard. Had an urgent referral, however by the time I spoke to ENT (phone call not in person) it had gone down so they discharged me! I was reassured after this but I've noticed the original node is still up and is visible when I turn my neck- its super soft and squidgy though. I've been so scared but trying to be brave and booked a doctors appointment for later today! 

Sorry to hijack your chat, it's just nice to get it all off my mind. I don't want to worry my family! 

All the best, Chloe x

Hi Chloe, 

I'm so glad these posts have helped you. I hope you get on OK at your doctors appointment. It is such an ongoing worry, especially when you notice more popping up. 

Like you, I just forgot about it (or ignored it really) until I noticed more. The original one on my neck is also soft and squishy, but the ones around the collar bone are quite hard. I'm glad one of yours went back down again. Hopefully you can get some definite answers. 

I also kept it to myself for so long, now my partner knows but nobody else. No need to apologise, come back any time you need to talk. Let me know how you get on at the doctors. Fingers crossed you get some reassurance. Xxx