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,

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 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 Sallx,

Hope you are doing well!

Just wanted to jump back in here in case anyone comes scroll this later. 

I had finally had my ultrasound this morning! The doctor was super quiet and wouldnt say much, but I asked if I should be worried and she said not at all so I guess it's all fine! She said her speciality isn't the neck so wants someone 5o double check her report before she sends to my GP but it all looks fine to her. I've got to try and put this all behind me now!

All the best,

Chloe 

Hi ladies, 

I hope everyone is okay? 

Judgey, I am so sorry to hear about your diagnosis. I hope your treatment is going well and you too Rose...thinking of you both. 

Chloe, I'm so pleased to hear you had reassuring news. Hopefully you can put it behind you now. Lots of love to you all. Xx

I'm pleased to hear your good news Chloe :-)

hope you're well Sal? And Rose too? I think of you both often and hope that Rose's treatment is going smoothly. And you Judgey xxx

I'm not too bad thanks Danielle. Still get a little worried at times as to what these lumps actually are, as they're not showing any signs of going anytime soon. But oh well, what can you do?! 

Aww bless, I think of you all too. It's strange that we don’t know eachother but I couldn't be more grateful for everyone's support during that scary time. I hope you're keeping well and your health issues have got better. Xxx

Hi Sallx,

Just got a call from my GP to come in for an appointment on Friday to discuss the results. Freaking out again now because why would they want to see me in person if everything was normal?!

Hopefully its still nothing. 

Chloe

Hi Chloe, Oh no I'm so sorry to hear that. I know our immediate reaction is to worry, but hopefully it's nothing to be concerned about since the doctor didn't seem to be concerned at your ultrasound. Let us know how you get on. Good luck xxx

Thanks Sallx!

Just had my appointment- she said none of the lymph nodes looked concerning on the ultrasound but they did note a thyroid nodule, so I've been sent to get some bloods to test its functioning! Let's move on to my next worry now about thyroid cancer hopefully its also fine, she wasn't worried at all! 

All the best, Chloe

Hi all! Sorry I've been so quiet- I've just been getting through day by day.

My 'planned' chemo sessions have ended and I'm due to start radiotherapy in just over two weeks. I'm hopeful I won't need any more chemotherapy but I should find out for certain next week.

I hope you're all doing ok? Sorry to hear about your diagnosis Judgey - it sounds like we may be on a similar path.

My husband and I are taking the kids to Euro Disney (booked before my diagnosis) in just over a week and I've been signed off by the doctors to go so it's all systems go now trying to organise everything!

Lots of love and light to you xx

Hi Rose, 

So glad to hear your chemo went smoothly - hopefully you're over the worst of it now! If you don't mind me asking, how many cycles did you have? 

Less positive on my end - I had my first ABVD on Tuesday 22nd and I've been in hospital the last 3 days after developing heart palpitations on Tuesday and ending up in A&E til 5am :( No sign of being discharged before the weekend either unfortunately as my troponin (heart damage marker) is still too high. They think the Adriamycin is the culprit - it is known to be toxic to the heart so I guess I just got unlucky and it was a bit too much for my heart! I was meant to have the second chemo of my first round on Tuesday coming, but it will be delayed now as they need to decide what to do about the Adriamycin. Heart should be fine though, troponin levels are dropping and all the other scans have looked fine thus far, so fingers crossed it was just a bump in the road. I'm also due to get a PICC line put in my arm because they had a hard time getting my chemo cannula in (I'm 25 and apparantly "young" veins are deeper in your arm and make me a difficult patient ha!), so Ill have a permanent (until im done chemo) port in my arm from Monday. 

Bit of a rough journey and I've been feeling a bit sorry for myself in the hospital as I have never been admitted before! Hoping I'm just getting my "drama" out of the way early and it will be smooth sailing after this, rather than this being a sign of things to come!

Hope the rest of you are all doing well and have been able to put everything to the back of your minds after getting the all clear. Hope you have a great time on holidays Rose!! 

Hi Judgey, what an absolute nightmare. I'm so sorry to hear it's been so rough. I had two cycles of ABVD (so 4 doses in total) and the only issue I had was that the vinblastin caused tingling etc so I didn't have the last dose of that drug to avoid permanent nerve damage.

I had my PICC line in for the first dose and it's still in now - I'm really hoping they'll take it put next week. 

I'll be keeping everything crossed for you xxx