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, 

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

I really hope you don't mind me posting. You lovely ladies have been such a support to one another and it's so nice to read how you've been there for one another.

I also have a lump (doctor thinks lymph node) in the Supraclavicular region and after spending far too long on Google I am extremely worried. I have an appointment with an ENT specialist on Thursday but won't have a scan done that day unfortunately so I'll still be worrying. I feel so anxious because I've also found another lump on the other side of my neck plus I woke up dripping in sweat last night (I know this is a symptom of Lymphoma). I have a cough and had a weird rash appear on the other side of my neck too. I am almost 39 and have two young boys aged 6 and almost 4. They are my world and I am panicking about something being very wrong with me. Originally I saw a nurse who wanted to do the 'wait and see' approach but I pushed for a referral today from a lovely nurse practioner and now I feel at least I have the ball rolling. I only happened to find the lump by chance because I had such bad neck pain following a bout with Covid at the beginning of January. I didn't go to the GP straight away as I wanted to see if it'd go down but it hasn't. I am hoping it's all to do with Covid as I know it can do strange things to our bodies. Horrible having the waiting and worrying though. Hope all of you ladies are doing well and thank you for listening xx

Hi Sallx,

Just got home from my GP appointment. The doctor wasn't concerned at all, he said my lymph nodes were very small and soft which is a good sign. He said that sometimes they swell and stay that way forever as they form what is know as calcium deposits which is like scar tissue! He's sent me for an ultrasound (non urgent) so I'm going to try and take his word and stop touching/looking until whenever that may be. 

My health anxiety has been so bad I'm even doubting what he's said and thinking what if he felt a different node to the one I was worried about but we have to trust the professionals and im starting to believe my mind is making matters worse!

Chloe xxx

Hi Sallx,

Just got home from my GP appointment. The doctor wasn't concerned at all, he said my lymph nodes were very small and soft which is a good sign. He said that sometimes they swell and stay that way forever as they form what is know as calcium deposits which is like scar tissue! He's sent me for an ultrasound (non urgent) so I'm going to try and take his word and stop touching/looking until whenever that may be. 

My health anxiety has been so bad I'm even doubting what he's said and thinking what if he felt a different node to the one I was worried about but we have to trust the professionals and im starting to believe my mind is making matters worse!

Chloe xxx

Hi Chloe,

I'm also going through the same thing so I hope you don't mind me replying.

Glad your doctor thought it was nothing to worry about and also glad that you've been sent for a scan anyway. This is definitely what should be done so that it can put your mind at ease. I hope you get good results and can relax soon.

I have my appointment Thursday morning at 9:30am and a scan booked now for Friday at 8:30am. Pleased I don't have long to wait as my anxiety is through the roof.

Take care everyone x

Hi ljd62,

Of course I dont mind you replying- I know how much talking about our worries helps!

I'm glad he wasnt too concerned, but will definately not feel 100% happy untill I have the ultrasound- hopefully it wont be too long of a wait for this but at the end of the day i've gone nearly 8 months with this lump and there's been minimal/if any change in size, whats another month or so going to change! 

Im glad you've got booked in so quickly!! Fingers crossed it can all be done and dusted by the weekend. Please let me know how it goes!

All the best, Chloe x

Hi chloe, 

I'm so sorry to hear it wasn't much reassurance. Its great that the doctor isn't concerned though so I hope you take some comfort from that. And fingers crossed your ultrasound won't take too long.

I can remember waiting for mine and I couldn't think of anything else so I even booked it privately. But because its gone on for so long, my anxiety has eased a lot over it.

I completely know what you mean with the health anxiety though. I absolutely convinced myself that it was bad, and still do sometimes now. I just want them to tell me what is causing it. If they can't figure out a cause, but they say they've ruled out anything serious, I would be happy with that. However, even though my tests have come back ok so far, they still want to investigate further which is good, but it continues that worry. 

It's definitely a good idea to stop feeling for them. Even though its almost impossible as we want to keep checking to see if they've gone or changed at all, but I felt a lot better when I only allowed myself to check now and again. And I agree, my mind definitely made things worse...it really can play tricks on us at times and make us question things.

We're here anytime you need to talk. Xxx

Hi Sallx,

I feel a little more settled than I did this morning, but have still touched the lumps multiple times since my doctors! Tomorrow is a new day and I'll make it my aim to give myself no more than 30 mins worry time each day moving forward. It just unsettles me you can see the lump when I turn my neck! 

When are your next tests! Do keep us updated!

You've been a saviour today, thanks for listening. I had told my partner and he was the one who convinced me to go gp and he came with me today. He was satisfied im fine so I feel like I cant keep going on now!

All the best, Chloe x 

Aww I'm glad you feel a little better. Don't beat yourself up, it's so difficult to stop touching them as we get so used to it. And I think deep down we are thinking by touching them, it will help us figure out what they are, or what is causing them. Even if you go an hour without touching them or thinking about it, be proud of yourself. 

I have blood tests and another ultrasound coming up soon. Thanks, I will keep you updated. 

Aww, you're so welcome. It's so hard to understand unless you're in that position and it's all you can think about.

Lots of love xxx

Thank you for your replies. I also keep prodding my lumps, which I know I shouldn't. I'm also panicking about the night sweat I had last night as I've never had one before and with the lymph nodes up in my neck I can't help but think I've got lymphoma. I keep crying and looking at my boys worrying that if it's something bad it'll upset everything. Hope you ladies are fairing better with the worrying. I don't really know what to do with myself x

Hi ladies,

sorry to hear about your lymph node woes.. Sal, Rose and I can all empathise! You don't need me to tell you that a) there are many benign causes of swollen nodes and b) though no one wants cancer, lymphoma is often very responsive to treatment. 

what I will say is that the mind can make everything worse. Hyper vigilance will have you noticing every little twinge, and anxiety will cause you to have symptoms that mimic the very things you're worrying about! Never underestimate the effect stress can have on your body.

step away from self-diagnosing. Push for testing and make sure the Dr's are taking you seriously. They are the only ones we should be paying attention to, not the false tales that our over cautious brains tell us! Do not prod your nodes as that makes them bigger. Limit it to twice a week and just to monitor progress. Once you go a few days without touching them, the urge to do so starts to pass and you'll notice your anxiety decrease- trust me!

I have recently started CBT for health anxiety. The symptoms I have had for the last 6 months may have been very real, but my mental response to them has shocked me. I have been a mess. You will see that despite Rose's diagnosis, she is able to keep things in proportion, stay motivated to get through her treatment and keep positive to live her best life. That is the definition of being resilient and having a mindset that will see you through difficulties. I am trying to aim for that- whatever may or may not be wrong with me, I'm aiming to have the best possible attitude to keep me mentally well. I can't keep living like im dying all the time :-( 

my ultrasound went well and the dr's aren't concerned about my nodes. I struggle with having no explanation and constantly worry they've missed something. The stress then continues a cycle of symptoms. It helps to recognise this but doesn't stop the cycle completely! When I was waiting for my US I found that throwing myself into distractions with 100% effort was good. I initially shunned away from family and friends but getting out there and being social did eventually help to divert my mind. 
 

keep talking ladies! It helps us all to have these chats. Sal and Rose have helped keep me sane xx

Hi all,

I'm so sorry to hear so many are struggling- it really is such a difficult time waiting for tests, results, consultations etc etc.

I don't know much about these things in a larger sense but, if it's any comfort to anyone, although my diagnosis came as huge shock it really isn't the worst thing in the world. I'm not suggesting for 1 second that it's OK to have Hodgkin's lymphoma but I am saying that I'm choosing to concentrate on a few facts:

My lymphoma is treatable, no matter what stage it is

I live in a place where diagnosis and treatment is possible 

My doctors are specialists and Google doesn't help me

If anyone ever wants to ask me any questions please do reach out.

This little thread has been a light during dark times and Danielle and Sally have been amazing support.

My children took the news as well as can be expected and tomorrow is the day I get my dates to start chemotherapy, my final grading and full biopsy report as well as cutting my hair short! I'm shattered but optimistic, scared but positive and all of that's OK with me!

Sending you all love and light xxx

I think that's such an amazing mind set to have. Thank you for sharing this with us Rose and good luck for your final results. Please let us know how you got on. Will be thinking of you.xx

If you don't mind me asking, how old are you and what symptoms did you have? Did you have more than one lump? I'm scared as I found another one yesterday on the other side of my neck. I didn't wake up sweating last night which was good though. I just hate the waiting game. It makes me feel so sick. 

Hope you're all doing ok xx

Hi! Thanks for thinking of me - all positive vibes gratefully received xxx

I'm 41 and in terms of symptoms the only thing I had was a swollen lymph node on the right hand side of my neck. It is rock hard and about 3cm. It continued to grow over a number of months which sent me to the GP. Funnily enough the GP referred me as a possible thyroid issue rather than any thing else. It was the doctor who performed the ultrasound who first spotted something that wasn't OK and took biopsies immediately. 

The only other symptom has been losing weight (which I'd attributed to grief) and tiredness (which I attributed to being a mum!)

I hope this helps a bit but if not please do ask me anything else.

Sending you strength and positivety xxx